Recent Advances in Assistive Technology and Engineering (RAatE)
Advances in Clinical Neuroscience and Rehabilitation (2008)
Available from eprints.whiterose.ac.uk
or
Abstract
RAatE 2007 is the only UK conference focused on the latest innovations in assistive technology and is attended by people who use, work with, develop and research on assistive technology (AT). RAatE is held annually and attracts a regular but diverse audience, with this year's audience approaching 150 over two days. The ACT Programme, a South Yorkshire based programme of research and development and knowledge transfer, acted as co-sponsors for 2007, and enabled a number of overseas based keynote speakers to be brought to the conference.
Available from eprints.whiterose.ac.uk
Page 1
Recent Advances in Assistive Technology and Engineering (RAatE)
ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008 I 39
Conference Report
R
AatE 2007 is the only UK conference focused on the lat-
est innovations in assistive technology and is attended by
people who use, work with, develop and research on
assistive technology (AT). RAatE is held annually and attracts a
regular but diverse audience, with this year’s audience
approaching 150 over two days. The ACT Programme, a South
Yorkshire based programme of research and development and
knowledge transfer, acted as co-sponsors for 2007, and enabled
a number of overseas based keynote speakers to be brought to
the conference.
The conference started with training courses on various areas
of AT delivered by key professionals and organisations. These
short courses enabled people to reinforce or extend their skills
in some key areas. Topics covered were Alternative and
Augmentative Communication (AAC); Accessing Technology;
Paediatric Postural Management; and a workshop on Outcome
Measures in AT. The keynotes throughout the conference were
all stimulating and delivered by well renowned presenters: Dr
Branko Cellar from the Laboratory for Health Telematics in
New South Wales, Australia delivered a talk around his founding
work in Telecare; Dr Jeff Jutai, from the Lawson Health Research
Institute in London, Ontario, Canada discussed Outcome
Measures in Assistive Technology including his PIADS measure;
and Adam Walker, assistant director of Triangle, gave a user’s
perspective on AT, particularly how persistent one has to be to
secure adequate funding.
Paper sessions demonstrated the range and depth of work
occurring within AT – the number of paper submissions hav-
ing increased substantially over previous years and the high
quality of papers presented reflected this. Themes for the
papers included:
AAC – an innovative communication aid, project review
and task analysis were presented;
Outcomes – including different services’ experiences and
perspectives of different measures;
Telecare and housing – innovative monitoring technology
in addition to large scale research projects in housing
technology were addressed;
Trade presentations – the latest innovations from
companies in AAC, telecare and powered mobility;
New Research Programmes – updates from two new, large,
AT research, development and funding programmes;
Eye Gaze – two case studies of the application of this new
technology as well as development of a new eye-gaze based
device;
Cognitive Support – the research and development of
different systems to support people with various cognitive
difficulties;
Wheelchairs – research innovations in control of manual
and powered chairs, navigating and also analysing attendant
propulsion of chairs;
ICT – the impact of new and emerging information
technology on people with disabilities, novel AT software
applications and modelling;
AT devices – a wide variety of device development,
including a novel urine collection device, switch input
method and tremor compensation;
Telecare – evaluation of smart home technology and
location-independent monitoring using GPS.
Workshops covered a number of areas and brought about a
range of discussion, as did the parallel papers on projects run
by the ACT programme. Workshops covered:
Speech driven assistive technology – looking at the reason’s that voice is
not heavily used as an access method and feeding into the development of
a new speech controlled product;
Workforce development – examining the workforce requirements for
training and discussing recent initiatives in this area;
Bringing an AT device to market – the process of designing, developing,
manufacturing and testing an AT device and the steps required to bring
this to market were discussed.
Of note, too, was the exhibition, which was constantly ‘buzzing’ with activity
during the breaks and had an excellent range of over 20 AT exhibitors. Areas
covered within the exhibition included: powered mobility; posture manage-
ment systems; alternative and augmentative communication; voluntary sector;
environmental control; eye-gaze; telecare and telehealth.
RAatE is organised by IPEM and the RAatE Committee: Donna Cowan
(Chailey Heritage Clinical Services), Keren Down (FAST), Paul Dryer (Kings
College Foundation Trust), Colin Clayton, Sarah Vines (Croydon Wheelchair
Services), Ruth E Mayagoitia (King’s College London) & Simon Judge (Barnsley
AT Team). Check the RAatE website for details of future conferences.
Simon Judge,
Senior Clinical Scientist, Barnsley AT Team.
Recent Advances in Assistive Technology and Engineering
(RAatE) 2007
26-27 November, 2007; Sheffield, UK.
RAATE is the only UK conference
focused on the latest innovations in
Assistive Technology and is attended by
people who use, work with, develop and
research on Assistive Technology (AT)
Conference Report
R
AatE 2007 is the only UK conference focused on the lat-
est innovations in assistive technology and is attended by
people who use, work with, develop and research on
assistive technology (AT). RAatE is held annually and attracts a
regular but diverse audience, with this year’s audience
approaching 150 over two days. The ACT Programme, a South
Yorkshire based programme of research and development and
knowledge transfer, acted as co-sponsors for 2007, and enabled
a number of overseas based keynote speakers to be brought to
the conference.
The conference started with training courses on various areas
of AT delivered by key professionals and organisations. These
short courses enabled people to reinforce or extend their skills
in some key areas. Topics covered were Alternative and
Augmentative Communication (AAC); Accessing Technology;
Paediatric Postural Management; and a workshop on Outcome
Measures in AT. The keynotes throughout the conference were
all stimulating and delivered by well renowned presenters: Dr
Branko Cellar from the Laboratory for Health Telematics in
New South Wales, Australia delivered a talk around his founding
work in Telecare; Dr Jeff Jutai, from the Lawson Health Research
Institute in London, Ontario, Canada discussed Outcome
Measures in Assistive Technology including his PIADS measure;
and Adam Walker, assistant director of Triangle, gave a user’s
perspective on AT, particularly how persistent one has to be to
secure adequate funding.
Paper sessions demonstrated the range and depth of work
occurring within AT – the number of paper submissions hav-
ing increased substantially over previous years and the high
quality of papers presented reflected this. Themes for the
papers included:
AAC – an innovative communication aid, project review
and task analysis were presented;
Outcomes – including different services’ experiences and
perspectives of different measures;
Telecare and housing – innovative monitoring technology
in addition to large scale research projects in housing
technology were addressed;
Trade presentations – the latest innovations from
companies in AAC, telecare and powered mobility;
New Research Programmes – updates from two new, large,
AT research, development and funding programmes;
Eye Gaze – two case studies of the application of this new
technology as well as development of a new eye-gaze based
device;
Cognitive Support – the research and development of
different systems to support people with various cognitive
difficulties;
Wheelchairs – research innovations in control of manual
and powered chairs, navigating and also analysing attendant
propulsion of chairs;
ICT – the impact of new and emerging information
technology on people with disabilities, novel AT software
applications and modelling;
AT devices – a wide variety of device development,
including a novel urine collection device, switch input
method and tremor compensation;
Telecare – evaluation of smart home technology and
location-independent monitoring using GPS.
Workshops covered a number of areas and brought about a
range of discussion, as did the parallel papers on projects run
by the ACT programme. Workshops covered:
Speech driven assistive technology – looking at the reason’s that voice is
not heavily used as an access method and feeding into the development of
a new speech controlled product;
Workforce development – examining the workforce requirements for
training and discussing recent initiatives in this area;
Bringing an AT device to market – the process of designing, developing,
manufacturing and testing an AT device and the steps required to bring
this to market were discussed.
Of note, too, was the exhibition, which was constantly ‘buzzing’ with activity
during the breaks and had an excellent range of over 20 AT exhibitors. Areas
covered within the exhibition included: powered mobility; posture manage-
ment systems; alternative and augmentative communication; voluntary sector;
environmental control; eye-gaze; telecare and telehealth.
RAatE is organised by IPEM and the RAatE Committee: Donna Cowan
(Chailey Heritage Clinical Services), Keren Down (FAST), Paul Dryer (Kings
College Foundation Trust), Colin Clayton, Sarah Vines (Croydon Wheelchair
Services), Ruth E Mayagoitia (King’s College London) & Simon Judge (Barnsley
AT Team). Check the RAatE website for details of future conferences.
Simon Judge,
Senior Clinical Scientist, Barnsley AT Team.
Recent Advances in Assistive Technology and Engineering
(RAatE) 2007
26-27 November, 2007; Sheffield, UK.
RAATE is the only UK conference
focused on the latest innovations in
Assistive Technology and is attended by
people who use, work with, develop and
research on Assistive Technology (AT)
Page 2
40 I ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008
Conference Report
T
his year’s annual International Symposium on ALS/MND was held
in a cold, overcast Toronto. As ever, the meeting was extremely
well-organised by the Motor Neurone Disease (MND) Association
UK, in co-operation with the International Alliance of ALS/MND
Associations. The only hitch was the late arrival of the conference abstract
booklets, which finally pitched up on the last morning of the meeting,
having spent several days in scrutiny by Canadian customs. The dreari-
ness of the grey Toronto December weather was more than compensated
for by the excellent hotel and conference facilities and the liveliness of the
meeting. As in previous years the programme was run mainly as parallel
sessions, with emphasis on basic research and clinical aspects respective-
ly, catering to the 750 basic scientists, clinical researchers, clinicians and
health care professionals attending.
TDP-43 – Innocent bystander or key in pathogenesis?
The meeting opened with a clinical and pathological review by Michael
Strong, (London, Canada) in which he emphasised the heterogeneous
clinical disease we term ALS, and the varying biochemical abnormali-
ties. A highlight of his overview was his discussion of the role of TDP-
43 in the disease. Intracytoplasmic, ubiquitinated inclusions are a
pathological hall mark of ALS/MND, and similar ubiquitinated inclu-
sions are also evident in the clinical disorder of frontotemporal lobar
dementia. In late 2006 hyperphosphorylated forms of the DNA and
RNA binding protein TDP-43 were identified in these inclusions in
both disorders, and several recent papers have since confirmed these
findings. Interestingly, the inclusions evident in SOD-1 mutation pos-
itive cases of familial ALS do not seem to stain with antibodies to TDP-
43, suggesting that the inclusions (and possibly the pathogenic mecha-
nisms) in this familial variant differ from those seen in sporadic ALS.
Some have suggested that this casts doubt on the validity of the mutant
SOD-1 overexpressing mouse model as a useful model for the sporadic
disease. Professor Strong outlined elegant studies in his laboratory
showing that TDP-43 binds to and stabilises neurofilament light chain
mRNA, and forms complexes with both SOD1 and 14-3-3 protein. He
also showed data suggesting that TDP-43 and ubiquitin do not always
co-localise in ALS, and suggested that cytoplasmic TDP-43 aggregation
may be the earlier event, with the inclusions subsequently being deco-
rated by ubiquitin. Merely showing the presence of abnormally hyper-
phosphorylated TDP-43 in these inclusions does not of course confirm
their pathogenicity, and it is anticipated that ongoing studies will shed
light on whether and how this abnormal protein may cause disease.
Genetics of ALS
The other plenary presentation at the Opening Session was devoted to
the genetics of ALS. Peter Andersen (Umeo, Sweden) gave an excellent,
if very detailed, over-view of SOD-1 mutations in familial ALS. It has
now been over 15 years since such mutations were first identified and
some 156 different mutations have been detailed. Most of these
mutants are ‘missense, 17 are ‘nonsense’, 8 are ‘silent’, 8 are intronic and
2 are thought to affect intronic splice sites. Their identification has
allowed specific molecular diagnosis, earlier clinical diagnosis, some
prognostic information (e.g. rapid disease progression associated with
18th International Symposium on ALS/MND
1-3 December, 2007; Toronto, Canada.
Resources:
The RAatE website – for details of future conferences and
conference proceedings: www.raate.org.uk
www.raate.org.uk/raate-programme
www.raate.org.uk/exhibition
The ACT Programme: www.actprogramme.org.uk
A blog entry about RAatE:
http://eduspaces.net/stevelee/weblog/225753.html
Cogain: www.cogain.org
A number of papers from RAatE will feature in the new Journal of
Assistive Technologies: www.pavpub.com/pavpub/journals/JAT/
One of the most talked about topics at
RAatE this year was the use of eye gaze
for control of computers or AAC. This
technology has been available for some
time in different fields, however techno-
logical and cost improvements have
raised its profile as a method of control.
The COGAIN project - an EU wide ‘net-
work of excellence’ - and the ACE
Centre-led user-involvement work pack-
age has also done much in recent years
to progress eye gaze within AT.
RAatE 2007 featured a paper session
on eye gaze, in addition to several sys-
tems and suppliers demonstrating sys-
tems in the exhibition and eye gaze
forming part of the ACE Centre’s training
package on accessing AT. The papers
presented featured two interesting case
studies of recent use of eye gaze. The
cases presented were both ‘challenging’
cases – the Barnsley Assistive
Technology Team presented the success-
ful use of a system with a client who has
only a single up-down eye movement,
they also detailed the system the team
had developed to enable him to com-
municate using this limited eye gaze
data. Chailey Heritage Clinical Services
presented the second case study of a
child who used an existing paper based
eye-pointing system but wished to
investigate options which would allow
more autonomous communication.
The rationale behind choice of system
was discussed and the client’s case his-
tory, which eventually ended in rejection
of eye gaze as a method, helped build
the case history of where eye gaze is
appropriate. To complete the session, a
novel new eye gaze system was pre-
sented designed for environmental con-
trol, demonstrating the continued
research interest in this area.
Eye gaze will undoubtedly continue
to make an impact in the AT field over
the next years and RAatE will, no
doubt, have more papers and exciting
innovations in the future on this
theme.
RAatE 2007 – Key topic – Eye Gaze
© COGAIN
Conference Report
T
his year’s annual International Symposium on ALS/MND was held
in a cold, overcast Toronto. As ever, the meeting was extremely
well-organised by the Motor Neurone Disease (MND) Association
UK, in co-operation with the International Alliance of ALS/MND
Associations. The only hitch was the late arrival of the conference abstract
booklets, which finally pitched up on the last morning of the meeting,
having spent several days in scrutiny by Canadian customs. The dreari-
ness of the grey Toronto December weather was more than compensated
for by the excellent hotel and conference facilities and the liveliness of the
meeting. As in previous years the programme was run mainly as parallel
sessions, with emphasis on basic research and clinical aspects respective-
ly, catering to the 750 basic scientists, clinical researchers, clinicians and
health care professionals attending.
TDP-43 – Innocent bystander or key in pathogenesis?
The meeting opened with a clinical and pathological review by Michael
Strong, (London, Canada) in which he emphasised the heterogeneous
clinical disease we term ALS, and the varying biochemical abnormali-
ties. A highlight of his overview was his discussion of the role of TDP-
43 in the disease. Intracytoplasmic, ubiquitinated inclusions are a
pathological hall mark of ALS/MND, and similar ubiquitinated inclu-
sions are also evident in the clinical disorder of frontotemporal lobar
dementia. In late 2006 hyperphosphorylated forms of the DNA and
RNA binding protein TDP-43 were identified in these inclusions in
both disorders, and several recent papers have since confirmed these
findings. Interestingly, the inclusions evident in SOD-1 mutation pos-
itive cases of familial ALS do not seem to stain with antibodies to TDP-
43, suggesting that the inclusions (and possibly the pathogenic mecha-
nisms) in this familial variant differ from those seen in sporadic ALS.
Some have suggested that this casts doubt on the validity of the mutant
SOD-1 overexpressing mouse model as a useful model for the sporadic
disease. Professor Strong outlined elegant studies in his laboratory
showing that TDP-43 binds to and stabilises neurofilament light chain
mRNA, and forms complexes with both SOD1 and 14-3-3 protein. He
also showed data suggesting that TDP-43 and ubiquitin do not always
co-localise in ALS, and suggested that cytoplasmic TDP-43 aggregation
may be the earlier event, with the inclusions subsequently being deco-
rated by ubiquitin. Merely showing the presence of abnormally hyper-
phosphorylated TDP-43 in these inclusions does not of course confirm
their pathogenicity, and it is anticipated that ongoing studies will shed
light on whether and how this abnormal protein may cause disease.
Genetics of ALS
The other plenary presentation at the Opening Session was devoted to
the genetics of ALS. Peter Andersen (Umeo, Sweden) gave an excellent,
if very detailed, over-view of SOD-1 mutations in familial ALS. It has
now been over 15 years since such mutations were first identified and
some 156 different mutations have been detailed. Most of these
mutants are ‘missense, 17 are ‘nonsense’, 8 are ‘silent’, 8 are intronic and
2 are thought to affect intronic splice sites. Their identification has
allowed specific molecular diagnosis, earlier clinical diagnosis, some
prognostic information (e.g. rapid disease progression associated with
18th International Symposium on ALS/MND
1-3 December, 2007; Toronto, Canada.
Resources:
The RAatE website – for details of future conferences and
conference proceedings: www.raate.org.uk
www.raate.org.uk/raate-programme
www.raate.org.uk/exhibition
The ACT Programme: www.actprogramme.org.uk
A blog entry about RAatE:
http://eduspaces.net/stevelee/weblog/225753.html
Cogain: www.cogain.org
A number of papers from RAatE will feature in the new Journal of
Assistive Technologies: www.pavpub.com/pavpub/journals/JAT/
One of the most talked about topics at
RAatE this year was the use of eye gaze
for control of computers or AAC. This
technology has been available for some
time in different fields, however techno-
logical and cost improvements have
raised its profile as a method of control.
The COGAIN project - an EU wide ‘net-
work of excellence’ - and the ACE
Centre-led user-involvement work pack-
age has also done much in recent years
to progress eye gaze within AT.
RAatE 2007 featured a paper session
on eye gaze, in addition to several sys-
tems and suppliers demonstrating sys-
tems in the exhibition and eye gaze
forming part of the ACE Centre’s training
package on accessing AT. The papers
presented featured two interesting case
studies of recent use of eye gaze. The
cases presented were both ‘challenging’
cases – the Barnsley Assistive
Technology Team presented the success-
ful use of a system with a client who has
only a single up-down eye movement,
they also detailed the system the team
had developed to enable him to com-
municate using this limited eye gaze
data. Chailey Heritage Clinical Services
presented the second case study of a
child who used an existing paper based
eye-pointing system but wished to
investigate options which would allow
more autonomous communication.
The rationale behind choice of system
was discussed and the client’s case his-
tory, which eventually ended in rejection
of eye gaze as a method, helped build
the case history of where eye gaze is
appropriate. To complete the session, a
novel new eye gaze system was pre-
sented designed for environmental con-
trol, demonstrating the continued
research interest in this area.
Eye gaze will undoubtedly continue
to make an impact in the AT field over
the next years and RAatE will, no
doubt, have more papers and exciting
innovations in the future on this
theme.
RAatE 2007 – Key topic – Eye Gaze
© COGAIN
Page 3
ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008 I 41
Conference Report
the A4V mutation) and the development of the mutant SOD-1 mouse
model, but unfortunately no effective therapies as yet. He presented a
study showing that more individuals with ALS had a family history of
the disease (23%) when this was carefully inquired about, compared to
5% previously recorded in that same population. While this discrepan-
cy may not be so large elsewhere, I think it behoves all of us to ensure
that we take adequate family histories and document when the family
history is simply not known, rather than assume it is negative.
Highlights of the genetics presentations elsewhere in the meeting
included discussion of the genome wide association studies (GWAS)
performed in the last year. There have been a number of these (from
the US, Holland and Ireland), all now published, and following the
example of Traynor et al, data is being made publicly available to allow
subsequent meta-analysis. My take on the GWAS in ALS to date is that
no study has as yet had sufficient sample numbers, and further collab-
oration is required. Extrapolating from the recent GWAS in type II dia-
betes, Frayling has suggested that ‘hits’ with p values < 5 X 10-7 tend to
be replicated in different populations, and are probably significant.
None of the studies in ALS has yielded association with such certainty
as this, but again, with collaboration and pooling of resources, ade-
quately powered studies in ALS should soon be achievable. If however
susceptibility to the heterogeneous disorder of ALS is due to multiple
rare genetic variants, standard genome wide approaches which depend
on common alleles conferring susceptibility are unlikely to prove suc-
cessful.
Hypermetabolism in ALS
Another interesting session considered hypermetabolism in ALS. Jean-
Philippe Loeffler (Strasbourg, France) reviewed the evidence for a
hypermetabolic state in some ALS patients, a state that seems to confer
survival advantage. His group has recently reported that hyperlipi-
daemia is a typical feature of ALS patients and that an abnormally ele-
vated LDL/HDL ratio significantly increases survival by more than 12
months. A high fat diet early in the disease improves survival in mutant
SOD-1 mice, and he presented data to suggest that increased energy
demand of itself is sufficient to damage the motor unit. Clinical recom-
mendations which might follow on from these observations would be
that high lipids might be protective in ALS, and that patients with ALS
should not be on lipid-lowering agents. A poster by Zinman et al
(Toronto) showed data that agrees with this advice. This group
observed that the rate of decline in ALS-FRS in patients in their clinic
who were taking statins was 1.29 units/month, compared to a decline
of 0.77 units/month in patients not on statins. Patients on statins also
reported greater frequency and severity of muscle cramps. I have cer-
tainly seen patients with ALS who relate onset of their symptoms to
starting a statin, and I think it is prudent to advise patients with ALS to
consider stopping these drugs.
Clinical trials
In this short review it is impossible to do justice to the many other
good sessions at the meeting. In the session on clinical trials, no new
effective agents were reported. The disappointing results of the US
minocycline trial were presented (Gordon et al, New York). Analysis
showed a 25% faster deterioration in the decline in ALS-FRS in the
minocycline group compared to placebo. This has been interpreted as
perhaps being due to an adverse interaction of minocycline with rilu-
zole, and there are additional concerns about an inappropriately high
dose of minocycline having been used. Nevertheless, the data at pres-
ent are such that we cannot recommend minocycline to patients.
I managed to get to some of the session on ‘Evaluating Unproven
Treatments’, in which Leonard Van den Berg (Utrecht) gave an excellent
update on the use of olfactory ensheathing cell transplants in the dis-
ease. He reviewed the two studies by Huang that have been published
in Chinese journals, one of which reports improvements in the ALS-
FRS scores within four weeks in 77% of 327 patients who received such
transplants. As outlined by Van den Berg, these publications were not
peer-reviewed, the follow-up was too short, the intervention was not
placebo-controlled, and it is not clear that appropriate consent proce-
dures were followed. He then reported his follow-up of 13 Dutch
patients who had received cell transplants in China. Seven of these
reported a subjective increase in well-being and muscle strength with-
in 24 hours of the procedure (possibly due to the steroid therapy given
at the time of transplant), but none of them showed any improvements
at 4 or 12 month post-procedure assessments in Holland. Leonard gave
a straightforward plea for clinicians to tell patients of placebo effects,
to warn of the high costs of such unproven therapies ($25,000 upwards
for ensheathing cell transplants), to outline the side-effects if known
and to defend to patients our system of ethical scrutiny of the research
we do. Yes, ethics applications are cumbersome, but they do afford our
patients some protection. While not wanting to dash patients’ hopes,
we have a duty to tell them when proposed treatments have not been
shown to work.
And to next year…
The meeting included a video by Steven Hawking inviting delegates to
reconvene for the 19th International ALS/MDS Symposium next year.
The venue – a sunny Birmingham, UK, the city which hosted the first
two of these symposia back in the 1990s with a handful of delegates in
attendence. I hope that many UK neuroscientists and clinicians will
come along from 3-5 November, 2008. ALS has not yet been cracked,
and attracting more minds to the research and care of this progressive
disease can only be a good thing.
Karen E Morrison, Professor of Neurology,
University of Birmingham,
Honorary Consultant Neurologist,
University Hospitals Birmingham NHS Foundation Trust,
Co-Director of Birmingham MND Care and Research Centre.
Conference Report
the A4V mutation) and the development of the mutant SOD-1 mouse
model, but unfortunately no effective therapies as yet. He presented a
study showing that more individuals with ALS had a family history of
the disease (23%) when this was carefully inquired about, compared to
5% previously recorded in that same population. While this discrepan-
cy may not be so large elsewhere, I think it behoves all of us to ensure
that we take adequate family histories and document when the family
history is simply not known, rather than assume it is negative.
Highlights of the genetics presentations elsewhere in the meeting
included discussion of the genome wide association studies (GWAS)
performed in the last year. There have been a number of these (from
the US, Holland and Ireland), all now published, and following the
example of Traynor et al, data is being made publicly available to allow
subsequent meta-analysis. My take on the GWAS in ALS to date is that
no study has as yet had sufficient sample numbers, and further collab-
oration is required. Extrapolating from the recent GWAS in type II dia-
betes, Frayling has suggested that ‘hits’ with p values < 5 X 10-7 tend to
be replicated in different populations, and are probably significant.
None of the studies in ALS has yielded association with such certainty
as this, but again, with collaboration and pooling of resources, ade-
quately powered studies in ALS should soon be achievable. If however
susceptibility to the heterogeneous disorder of ALS is due to multiple
rare genetic variants, standard genome wide approaches which depend
on common alleles conferring susceptibility are unlikely to prove suc-
cessful.
Hypermetabolism in ALS
Another interesting session considered hypermetabolism in ALS. Jean-
Philippe Loeffler (Strasbourg, France) reviewed the evidence for a
hypermetabolic state in some ALS patients, a state that seems to confer
survival advantage. His group has recently reported that hyperlipi-
daemia is a typical feature of ALS patients and that an abnormally ele-
vated LDL/HDL ratio significantly increases survival by more than 12
months. A high fat diet early in the disease improves survival in mutant
SOD-1 mice, and he presented data to suggest that increased energy
demand of itself is sufficient to damage the motor unit. Clinical recom-
mendations which might follow on from these observations would be
that high lipids might be protective in ALS, and that patients with ALS
should not be on lipid-lowering agents. A poster by Zinman et al
(Toronto) showed data that agrees with this advice. This group
observed that the rate of decline in ALS-FRS in patients in their clinic
who were taking statins was 1.29 units/month, compared to a decline
of 0.77 units/month in patients not on statins. Patients on statins also
reported greater frequency and severity of muscle cramps. I have cer-
tainly seen patients with ALS who relate onset of their symptoms to
starting a statin, and I think it is prudent to advise patients with ALS to
consider stopping these drugs.
Clinical trials
In this short review it is impossible to do justice to the many other
good sessions at the meeting. In the session on clinical trials, no new
effective agents were reported. The disappointing results of the US
minocycline trial were presented (Gordon et al, New York). Analysis
showed a 25% faster deterioration in the decline in ALS-FRS in the
minocycline group compared to placebo. This has been interpreted as
perhaps being due to an adverse interaction of minocycline with rilu-
zole, and there are additional concerns about an inappropriately high
dose of minocycline having been used. Nevertheless, the data at pres-
ent are such that we cannot recommend minocycline to patients.
I managed to get to some of the session on ‘Evaluating Unproven
Treatments’, in which Leonard Van den Berg (Utrecht) gave an excellent
update on the use of olfactory ensheathing cell transplants in the dis-
ease. He reviewed the two studies by Huang that have been published
in Chinese journals, one of which reports improvements in the ALS-
FRS scores within four weeks in 77% of 327 patients who received such
transplants. As outlined by Van den Berg, these publications were not
peer-reviewed, the follow-up was too short, the intervention was not
placebo-controlled, and it is not clear that appropriate consent proce-
dures were followed. He then reported his follow-up of 13 Dutch
patients who had received cell transplants in China. Seven of these
reported a subjective increase in well-being and muscle strength with-
in 24 hours of the procedure (possibly due to the steroid therapy given
at the time of transplant), but none of them showed any improvements
at 4 or 12 month post-procedure assessments in Holland. Leonard gave
a straightforward plea for clinicians to tell patients of placebo effects,
to warn of the high costs of such unproven therapies ($25,000 upwards
for ensheathing cell transplants), to outline the side-effects if known
and to defend to patients our system of ethical scrutiny of the research
we do. Yes, ethics applications are cumbersome, but they do afford our
patients some protection. While not wanting to dash patients’ hopes,
we have a duty to tell them when proposed treatments have not been
shown to work.
And to next year…
The meeting included a video by Steven Hawking inviting delegates to
reconvene for the 19th International ALS/MDS Symposium next year.
The venue – a sunny Birmingham, UK, the city which hosted the first
two of these symposia back in the 1990s with a handful of delegates in
attendence. I hope that many UK neuroscientists and clinicians will
come along from 3-5 November, 2008. ALS has not yet been cracked,
and attracting more minds to the research and care of this progressive
disease can only be a good thing.
Karen E Morrison, Professor of Neurology,
University of Birmingham,
Honorary Consultant Neurologist,
University Hospitals Birmingham NHS Foundation Trust,
Co-Director of Birmingham MND Care and Research Centre.
Page 4
42 I ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008
Conference Report
T
he second annual conference of the UK Stroke Forum hosted by
The Stroke Association met at the Harrogate International Centre
for three days in the first week of December – a historic week for
UK stroke services that saw the launch of the Department of Health’s
National Stroke Strategy for England.
Building on the success of last year’s inaugural conference, this year’s
conference welcomed around 1300 delegates from the stroke community
to share best practice and expertise, to network with colleagues, and to
enjoy a varied programme which attracted some of the leading experts in
their field sharing their knowledge and updating the conference on the
latest research.
In response to delegate feedback, this year’s conference was expanded
to include additional educational sessions as part of a training pro-
gramme offering designated sessions for
stroke physicians, nurses, and rehabilitation
specialists. On Tuesday 4 December, the
British Association of Stroke Physicians
organised training sessions on identifying and
treating the complications of stroke, the
National Stroke Nursing Forum organised
sessions on hyperacute care, continence and
medication management, and a rehabilitation
session covered managing the delivery of ther-
apy and rehabilitation for people who have
impaired communication and cognition.
Later in the day there was a Community Stroke Research and TRACS
drop-in session, and both the British Association of Stroke Physicians and
the National Stroke Nursing Forum held their respective annual general
meetings.
On Wednesday 5 December, the opening plenary session organised by
The Stroke Research Network focussed on ethical issues in stroke care and
research, including presentations on the ethical justification for resource
allocation to stroke, and a legal perspective on assessing incapacity and its
implications for stroke research.
Parallel sessions on the second day of the conference covered a wide
range of topics including neuroradiology, participating in the communi-
ty and returning to work after stroke, the future of stroke nursing, and
psychological support. A free papers session updated delegates on the lat-
est developments in various aspects of stroke research, and there was a
showcase of recent rehabilitation trials.
The day closed with the Princess Margaret Memorial Lecture, with
guest lecturer Professor Willy de Weerdt from the Department of
Rehabilitation Sciences, KU Leven, Belgium, presenting a collaborative
evaluation of rehabilitation in stroke across Europe.
In the evening, Harrogate’s Majestic Hotel was the venue for the UK
Stroke Forum Gala Dinner attended by 650 of the delegates.
The following day’s opening plenary session focussed on the imple-
mentation of a national stroke strategy. The Secretary of State for Health,
Alan Johnson, addressed the conference to introduce the National Stroke
Strategy for England and to mark its launch. Professor Martin Dennis
(Chair of the National Advisory Committee for the Scottish Stroke
Strategy) updated the conference on the progress of the Scottish Stroke
Strategy, and Professor Mike Harmer (Deputy Chief Medical Officer,
Wales) and Dr Carolyn Harper (Deputy Chief Medical Officer, Northern
Ireland) also made presentations.
Parallel sessions on the final day again covered a wide range of topics
including driving and vision, atrial fibrillation and glucose, acute stroke
management, delivering augmented rehabilitation therapy, and good
practice in user involvement. There was also a further free papers session.
The final plenary session in the afternoon began with a speech by The
Duke of Kent and the presentation of the British Stroke Research Group
prizes, followed by a showcase of research funded by UK Stroke Forum
charities with presentations by Professor Charles Wolfe (King’s College
London) on the South London Stroke Secondary Prevention
Programme, Jacqui Crosbie (University of Ulster) on virtual reality in
the rehabilitation of the upper limb following stroke, Professor Fenella
Kirkham (University College London Institute
of Child Health) on the prevention of morbid-
ity in sickle cell anaemia, Professor Peter
Langhorne (Glasgow Royal Infirmary) on the
development of the stroke unit, and Dr Wendy
Best (University College London) on aphasia
therapy.
Certainly, the feeling at this year’s conference
was that the event had been even bigger and better than last year, bring-
ing together even more people from the stroke community and establish-
ing the UK Stroke Forum Conference as an invaluable and truly multi-
disciplinary occasion. With a lively exhibition hall, ideas fair, and poster
displays covering acute care, clinical trials, cognitive and emotional issues,
good practice in user involvement, hyperacute care, nursing, swallowing,
and vision, delegates were offered a varied programme throughout the
three days with the programme highlight being the launch of the National
Stroke Strategy for England.
For further information on the 2007 conference, and to download
speaker presentations, please visit www.ukstrokeforum.org
Matthew King, The Stroke Association.
Specific examples of research presented at the conference include:
A new study has found that that Post Traumatic Stress
Disorder is the likely cause of psychological problems affecting
some carers of stroke survivors. The study, which focused on
stroke survivors with subarachnoid brain haemorrhage, was
conducted by Doctoral Research Student Adam Noble and
colleagues at Durham University (in collaboration with
Newcastle General Hospital and James Cook University
Hospital in Middlesbrough).
A study comparing the benefits of surgery (endarterectomy)
to endovascular therapy (angioplasty) to reopen a blocked
carotid artery has found that over a follow up period of eight
years, a recurrent distinct narrowing of the artery (by 70% or
more) was three times more likely after endovascular therapy
than surgery. The study was conducted by the Stroke Research
Group at the UCL Institute of Neurology in London
A new NHS clinical service which helps stroke patients with
dropped foot is being used at the Salisbury NHS Foundation
Trust. The conference provided the opportunity for staff from
the Trust to explain the condition and how this new clinical
service is proving of benefit to many stroke survivors.
The UK Stroke Forum Conference
4-6 December, 2007; Harrogate, UK.
Secretary of State for Health, Alan Johnson.
The auditorium.
Conference Report
T
he second annual conference of the UK Stroke Forum hosted by
The Stroke Association met at the Harrogate International Centre
for three days in the first week of December – a historic week for
UK stroke services that saw the launch of the Department of Health’s
National Stroke Strategy for England.
Building on the success of last year’s inaugural conference, this year’s
conference welcomed around 1300 delegates from the stroke community
to share best practice and expertise, to network with colleagues, and to
enjoy a varied programme which attracted some of the leading experts in
their field sharing their knowledge and updating the conference on the
latest research.
In response to delegate feedback, this year’s conference was expanded
to include additional educational sessions as part of a training pro-
gramme offering designated sessions for
stroke physicians, nurses, and rehabilitation
specialists. On Tuesday 4 December, the
British Association of Stroke Physicians
organised training sessions on identifying and
treating the complications of stroke, the
National Stroke Nursing Forum organised
sessions on hyperacute care, continence and
medication management, and a rehabilitation
session covered managing the delivery of ther-
apy and rehabilitation for people who have
impaired communication and cognition.
Later in the day there was a Community Stroke Research and TRACS
drop-in session, and both the British Association of Stroke Physicians and
the National Stroke Nursing Forum held their respective annual general
meetings.
On Wednesday 5 December, the opening plenary session organised by
The Stroke Research Network focussed on ethical issues in stroke care and
research, including presentations on the ethical justification for resource
allocation to stroke, and a legal perspective on assessing incapacity and its
implications for stroke research.
Parallel sessions on the second day of the conference covered a wide
range of topics including neuroradiology, participating in the communi-
ty and returning to work after stroke, the future of stroke nursing, and
psychological support. A free papers session updated delegates on the lat-
est developments in various aspects of stroke research, and there was a
showcase of recent rehabilitation trials.
The day closed with the Princess Margaret Memorial Lecture, with
guest lecturer Professor Willy de Weerdt from the Department of
Rehabilitation Sciences, KU Leven, Belgium, presenting a collaborative
evaluation of rehabilitation in stroke across Europe.
In the evening, Harrogate’s Majestic Hotel was the venue for the UK
Stroke Forum Gala Dinner attended by 650 of the delegates.
The following day’s opening plenary session focussed on the imple-
mentation of a national stroke strategy. The Secretary of State for Health,
Alan Johnson, addressed the conference to introduce the National Stroke
Strategy for England and to mark its launch. Professor Martin Dennis
(Chair of the National Advisory Committee for the Scottish Stroke
Strategy) updated the conference on the progress of the Scottish Stroke
Strategy, and Professor Mike Harmer (Deputy Chief Medical Officer,
Wales) and Dr Carolyn Harper (Deputy Chief Medical Officer, Northern
Ireland) also made presentations.
Parallel sessions on the final day again covered a wide range of topics
including driving and vision, atrial fibrillation and glucose, acute stroke
management, delivering augmented rehabilitation therapy, and good
practice in user involvement. There was also a further free papers session.
The final plenary session in the afternoon began with a speech by The
Duke of Kent and the presentation of the British Stroke Research Group
prizes, followed by a showcase of research funded by UK Stroke Forum
charities with presentations by Professor Charles Wolfe (King’s College
London) on the South London Stroke Secondary Prevention
Programme, Jacqui Crosbie (University of Ulster) on virtual reality in
the rehabilitation of the upper limb following stroke, Professor Fenella
Kirkham (University College London Institute
of Child Health) on the prevention of morbid-
ity in sickle cell anaemia, Professor Peter
Langhorne (Glasgow Royal Infirmary) on the
development of the stroke unit, and Dr Wendy
Best (University College London) on aphasia
therapy.
Certainly, the feeling at this year’s conference
was that the event had been even bigger and better than last year, bring-
ing together even more people from the stroke community and establish-
ing the UK Stroke Forum Conference as an invaluable and truly multi-
disciplinary occasion. With a lively exhibition hall, ideas fair, and poster
displays covering acute care, clinical trials, cognitive and emotional issues,
good practice in user involvement, hyperacute care, nursing, swallowing,
and vision, delegates were offered a varied programme throughout the
three days with the programme highlight being the launch of the National
Stroke Strategy for England.
For further information on the 2007 conference, and to download
speaker presentations, please visit www.ukstrokeforum.org
Matthew King, The Stroke Association.
Specific examples of research presented at the conference include:
A new study has found that that Post Traumatic Stress
Disorder is the likely cause of psychological problems affecting
some carers of stroke survivors. The study, which focused on
stroke survivors with subarachnoid brain haemorrhage, was
conducted by Doctoral Research Student Adam Noble and
colleagues at Durham University (in collaboration with
Newcastle General Hospital and James Cook University
Hospital in Middlesbrough).
A study comparing the benefits of surgery (endarterectomy)
to endovascular therapy (angioplasty) to reopen a blocked
carotid artery has found that over a follow up period of eight
years, a recurrent distinct narrowing of the artery (by 70% or
more) was three times more likely after endovascular therapy
than surgery. The study was conducted by the Stroke Research
Group at the UCL Institute of Neurology in London
A new NHS clinical service which helps stroke patients with
dropped foot is being used at the Salisbury NHS Foundation
Trust. The conference provided the opportunity for staff from
the Trust to explain the condition and how this new clinical
service is proving of benefit to many stroke survivors.
The UK Stroke Forum Conference
4-6 December, 2007; Harrogate, UK.
Secretary of State for Health, Alan Johnson.
The auditorium.
Page 5
ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008 I 43
Conference Report
T
he Encephalitis Society started out 15 years
ago as a fairly modest support group, in
response to the very limited help available
for people, and their families, who had been affect-
ed by encephalitis. Since then, it has expanded its
activities very substantially and is the only resource
of its kind in the world, providing evidence-based
information, education and support services. The
Society has also supported and funded a number of
research studies and is currently involved in a large
scale collaborative study of the outcome of
encephalitis with the University of York. The socie-
ty organises an annual seminar, which this year had
as its topic some of the less familiar varieties of
encephalitis.
Professor Tom Solomon from the new Liverpool
Brain Infections Group (www.liv.ac/braininfections)
opened the meeting with a presentation on
Encephalitis in the Global Village, which highlighted
the threat of emerging viruses. He has worked exten-
sively on Japanese encephalitis in Vietnam and,
although still a rarity in the UK, this is actually one
of the more important brain infections on a worldwide scale. There are
anything from 35,000 to 50,000 cases each year with a 30% mortality and
30% of survivors left with significant neurological sequelae.
It has a varied neurological profile which, as well as the more familiar
features of encephalitis, such as fever, headache, confusion, seizures,
raised ICP and coma, may involve acute movement disorders with
parkinsonism, orofacial dyskinesias, and choreoathetosis. The Japanese
encephalitis virus can also attack anterior horn cells, leading to presenta-
tion with a polio-like ascending flaccid paralysis. Dengue is another mos-
quito borne flavivirus which can cross the blood-brain barrier to produce
an encephalitic illness in a proportion of infected patients. Human
enterovirus 71 (HEV71) was isolated from the stool of a child with
encephalitis in California in 1969. After sporadic cases and small out-
breaks of HEV71 infection worldwide in the 1970s and 1980s, there was a
large and severe outbreak in Sarawak in 1997 with 34 deaths in 2628
reported cases. Neurological involvement included aseptic meningitis,
encephalitis and acute flaccid paralysis. Since then there have been fur-
ther outbreaks in Southeast Asia and Australia.
Although these illnesses have tended to be viewed in this country as
exotic rarities, the ease and speed of international travel and the effects of
climate change are making awareness of them increasingly relevant – a
point illustrated by the appearance of West Nile fever in New York City.
Fungal infections of the CNS are mostly familiar to us in the UK as
something seen on a relatively small scale in immunocompromised
patients. However, as Dr William Hope, Infectious Diseases Physician and
Senior Research Fellow, The University of Manchester, emphasised, they
actually represent a major problem from a global perspective.
Cryptococcus neoformans is a leading cause of AIDS-related deaths in
sub-Saharan Africa and aspergillus is a major source of morbidity and
mortality in immunocompromised patients, with an associated mortality
of 40-50%. The expenditure on antifungal drugs worldwide is astronom-
ical – billions of dollars – and rising. Dr Hope’s presentation emphasised
that the key to understanding the pathological process in cerebral
aspergillosis is the recognition that Aspergillus is angiotropic and
angioinvasive. He also reviewed the under-recognised but quite common
condition of neonatal haematogenous candida meningoencephalitis, in
which there is widespread involvement of the CNS with Candida.
The second theme of the meeting was the role of the immune system
in the pathogenesis of encephalitis. Oxford has been a leading centre in
the characterisation of voltage gated potassium channel antibody
(VGKC) encephalitis and Professor Angela Vincent from the Weatherall
Institute of Molecular Medicine reviewed the work of their group.
VGKC antibody-associated limbic encephalitis occurs in both men and
women. It is an adult-onset condition seen in people from 30 to over 70
years of age, with an acute or subacute onset of memory loss, seizures,
personality change and occasionally more florid
psychotic features, with high signal in the hip-
pocampi on MRI. Associated malignancies are
uncommon and immunological treatments with
intravenous immunoglobulins and steroids may
produce significant clinical improvement. This
antibody-mediated disorder seems to be an
expanding phenotype. VGKC antibodies may be
linked predominantly to seizures or atypical psy-
chosis occurring in isolation, with some indication
that immunosuppressive treatment may be helpful.
A proportion of patients with adult onset temporal
lobe seizures with hippocampal sclerosis may actu-
ally have a history of a previous encephalitic illness
with evolving MRI changes, raising the possibility
that untreated limbic encephalitis may be a
causative factor in some cases. So what started out
as something of a rarity may turn out to have much
broader implications for epileptology and neu-
ropsychiatry.
Dr Ian Hart, Consultant in Neurology and
Neuroimmunology from the Walton Centre in
Liverpool, developed the theme of autoimmune encephalitides, dealing
with Hashimoto’s encephalitis, Rasmussen’s encephalitis and paraneo-
plastic encephalitis.
He emphasised that these relatively rare conditions should not be for-
gotten in the differential diagnosis, looking for serum antibodies is use-
ful and can help make the diagnosis. They need to be thought of soon-
er rather than later, since immune treatments may be helpful in individ-
ual patients if they can be started early enough, before brain cell death
and permanent disability has developed.
The meeting ended with a fascinating presentation from Professor
Gavin Giovannoni from Barts and the London on encephalitis lethargica,
which in contemporary neurology is defined as an acute or sub-acute
encephalitis with at least three of the constellation of basal ganglia
involvement, oculogyric crises, ophthalmoplegia, obsessive-compulsive
behaviour, akinetic mutism, central respiratory irregularities and somno-
lence or inversion of the sleep-waking cycle. There is evidence of an
inflammatory process in the basal ganglia, brainstem and hypothalamus.
Encephalitis lethargica may be one of a spectrum of autoimmune CNS
disorders, characterised by anti-basal ganglia antibodies associated with
recent streptocococcal infection.
The encouraging message from this seminar is that the future for
encephalitis research in the UK looks bright, with the very active involve-
ment of several different research groups of international standing. It is
also encouraging that the Encephalitis Society is able to convene meetings
like this one, to make sure that the practical benefits from this new knowl-
edge will reach a wide audience as quickly as possible, helping improve
the care of people with encephalitis both in this country and on a more
global scale.
Dr Steve White and Ava Easton,
Encephalitis Society, UK.
The Encephalitis Society
7b Saville Street, Malton, YO17 7LL
www.encephalitis.info
Tel. +44 (0)1653 692 583
Email. ava@encephalitis.info
Ava Easton is the Society’s Development Manager and
Dr Steve White is Consultant Neurophysiologist,
St Mary’s Hospital, London.
Encephalitis – the Broader Spectrum: Rare Forms of Encephalitis
22 January, 2008; London, UK
Conference Report
T
he Encephalitis Society started out 15 years
ago as a fairly modest support group, in
response to the very limited help available
for people, and their families, who had been affect-
ed by encephalitis. Since then, it has expanded its
activities very substantially and is the only resource
of its kind in the world, providing evidence-based
information, education and support services. The
Society has also supported and funded a number of
research studies and is currently involved in a large
scale collaborative study of the outcome of
encephalitis with the University of York. The socie-
ty organises an annual seminar, which this year had
as its topic some of the less familiar varieties of
encephalitis.
Professor Tom Solomon from the new Liverpool
Brain Infections Group (www.liv.ac/braininfections)
opened the meeting with a presentation on
Encephalitis in the Global Village, which highlighted
the threat of emerging viruses. He has worked exten-
sively on Japanese encephalitis in Vietnam and,
although still a rarity in the UK, this is actually one
of the more important brain infections on a worldwide scale. There are
anything from 35,000 to 50,000 cases each year with a 30% mortality and
30% of survivors left with significant neurological sequelae.
It has a varied neurological profile which, as well as the more familiar
features of encephalitis, such as fever, headache, confusion, seizures,
raised ICP and coma, may involve acute movement disorders with
parkinsonism, orofacial dyskinesias, and choreoathetosis. The Japanese
encephalitis virus can also attack anterior horn cells, leading to presenta-
tion with a polio-like ascending flaccid paralysis. Dengue is another mos-
quito borne flavivirus which can cross the blood-brain barrier to produce
an encephalitic illness in a proportion of infected patients. Human
enterovirus 71 (HEV71) was isolated from the stool of a child with
encephalitis in California in 1969. After sporadic cases and small out-
breaks of HEV71 infection worldwide in the 1970s and 1980s, there was a
large and severe outbreak in Sarawak in 1997 with 34 deaths in 2628
reported cases. Neurological involvement included aseptic meningitis,
encephalitis and acute flaccid paralysis. Since then there have been fur-
ther outbreaks in Southeast Asia and Australia.
Although these illnesses have tended to be viewed in this country as
exotic rarities, the ease and speed of international travel and the effects of
climate change are making awareness of them increasingly relevant – a
point illustrated by the appearance of West Nile fever in New York City.
Fungal infections of the CNS are mostly familiar to us in the UK as
something seen on a relatively small scale in immunocompromised
patients. However, as Dr William Hope, Infectious Diseases Physician and
Senior Research Fellow, The University of Manchester, emphasised, they
actually represent a major problem from a global perspective.
Cryptococcus neoformans is a leading cause of AIDS-related deaths in
sub-Saharan Africa and aspergillus is a major source of morbidity and
mortality in immunocompromised patients, with an associated mortality
of 40-50%. The expenditure on antifungal drugs worldwide is astronom-
ical – billions of dollars – and rising. Dr Hope’s presentation emphasised
that the key to understanding the pathological process in cerebral
aspergillosis is the recognition that Aspergillus is angiotropic and
angioinvasive. He also reviewed the under-recognised but quite common
condition of neonatal haematogenous candida meningoencephalitis, in
which there is widespread involvement of the CNS with Candida.
The second theme of the meeting was the role of the immune system
in the pathogenesis of encephalitis. Oxford has been a leading centre in
the characterisation of voltage gated potassium channel antibody
(VGKC) encephalitis and Professor Angela Vincent from the Weatherall
Institute of Molecular Medicine reviewed the work of their group.
VGKC antibody-associated limbic encephalitis occurs in both men and
women. It is an adult-onset condition seen in people from 30 to over 70
years of age, with an acute or subacute onset of memory loss, seizures,
personality change and occasionally more florid
psychotic features, with high signal in the hip-
pocampi on MRI. Associated malignancies are
uncommon and immunological treatments with
intravenous immunoglobulins and steroids may
produce significant clinical improvement. This
antibody-mediated disorder seems to be an
expanding phenotype. VGKC antibodies may be
linked predominantly to seizures or atypical psy-
chosis occurring in isolation, with some indication
that immunosuppressive treatment may be helpful.
A proportion of patients with adult onset temporal
lobe seizures with hippocampal sclerosis may actu-
ally have a history of a previous encephalitic illness
with evolving MRI changes, raising the possibility
that untreated limbic encephalitis may be a
causative factor in some cases. So what started out
as something of a rarity may turn out to have much
broader implications for epileptology and neu-
ropsychiatry.
Dr Ian Hart, Consultant in Neurology and
Neuroimmunology from the Walton Centre in
Liverpool, developed the theme of autoimmune encephalitides, dealing
with Hashimoto’s encephalitis, Rasmussen’s encephalitis and paraneo-
plastic encephalitis.
He emphasised that these relatively rare conditions should not be for-
gotten in the differential diagnosis, looking for serum antibodies is use-
ful and can help make the diagnosis. They need to be thought of soon-
er rather than later, since immune treatments may be helpful in individ-
ual patients if they can be started early enough, before brain cell death
and permanent disability has developed.
The meeting ended with a fascinating presentation from Professor
Gavin Giovannoni from Barts and the London on encephalitis lethargica,
which in contemporary neurology is defined as an acute or sub-acute
encephalitis with at least three of the constellation of basal ganglia
involvement, oculogyric crises, ophthalmoplegia, obsessive-compulsive
behaviour, akinetic mutism, central respiratory irregularities and somno-
lence or inversion of the sleep-waking cycle. There is evidence of an
inflammatory process in the basal ganglia, brainstem and hypothalamus.
Encephalitis lethargica may be one of a spectrum of autoimmune CNS
disorders, characterised by anti-basal ganglia antibodies associated with
recent streptocococcal infection.
The encouraging message from this seminar is that the future for
encephalitis research in the UK looks bright, with the very active involve-
ment of several different research groups of international standing. It is
also encouraging that the Encephalitis Society is able to convene meetings
like this one, to make sure that the practical benefits from this new knowl-
edge will reach a wide audience as quickly as possible, helping improve
the care of people with encephalitis both in this country and on a more
global scale.
Dr Steve White and Ava Easton,
Encephalitis Society, UK.
The Encephalitis Society
7b Saville Street, Malton, YO17 7LL
www.encephalitis.info
Tel. +44 (0)1653 692 583
Email. ava@encephalitis.info
Ava Easton is the Society’s Development Manager and
Dr Steve White is Consultant Neurophysiologist,
St Mary’s Hospital, London.
Encephalitis – the Broader Spectrum: Rare Forms of Encephalitis
22 January, 2008; London, UK
Page 6
44 I ACNR VOLUME 8 NUMBER 1 MARCH/APRIL 2008
Conference Report
Neurology: Learning, knowledge, progress and the
future
Teaching programme :
22 practical workshops
Interactive case presentations
Practical sessions in clinical neurophysiology
24 Teaching courses covering all important topics in
Neurology
T
he eighteenth meeting of the European Neurological Society (ENS)
will be held at the Nice Acropolis Congress Centre on June 7-11,
2008. This year we will celebrate the 20th anniversary of the first
meeting of the ENS, which was also held in Nice, in June 1988.
From the very beginning we have pursued the original goals of our
society, namely excellence in the teaching and scientific programmes,
and support to young scientists. The number of participants of cours-
es, symposia and free communications has dramatically increased since
the beginning, but the spirit remains the same. The ENS bets on neu-
rologists in training, with 300 of them invited to attend the meeting.
Younger colleagues are especially interested in teaching courses. 37
courses will be available, including eight practical hands-on sessions
and four teaching courses jointly organised with colleagues of the
American Academy of Neurology. In addition, 22 workshops covering
the different fields of clinical neurology will take place during the
meeting.
The Presidential Symposium will be dedicated to current knowledge
and practical management of coma and locked-in syndrome. On the
following day a symposium will cover behavioural disorders and
dementia with talks on physiopathological bases of behaviour, synucle-
inopathies (Parkinson’s disease, Lewy body); mild cognitive impair-
ment and Alzheimer disease; and tauopathies (Fronto-temporal, PSP,
etc.). A symposium on autoimmune disorders of the nervous system
will include talks on latest developments in multiple sclerosis; autoim-
mune diseases of the neuromuscular junction; pathogenesis and treat-
ment of the Guillain Barré syndrome and immunopathogenesis of
inflammatory myopathies.
On the last day of the meeting there will be a symposium on multi-
ple sclerosis: when to start a treatment, and which treatment with the
best experts in the field from Europe and USA. Finally there will be a
symposium on imaging and management of transient ischaemic attack
(TIA) confronting the diagnosis and risk assessment for TIA, yield of
brain and vascular imaging (MRI, ultrasound etc.); feasibility and effi-
cacy of ultra early evaluation and intervention after a TIA, and the con-
cept of the TIA clinic.
In addition to the symposia, the Scientific Programme includes five
poster sessions and approximately 16 oral sessions of free communica-
tions. We will once again have poster walks to display the posters in a
lively and interesting format. Experts will lead a review of selected
posters promoting discussion with their authors. The selection of sci-
entific papers is based on the review by three experts in the field. On
average 800-900 free scientific papers are selected for presentation at
the meeting. We are looking very much forward to these stimulating
sessions.
Prof G Said, ENS Executive Committee.
Visit the ENS 2008 website www.ensinfo.com
Continuously updated scientific programme
Online registration as well as hotel & tour registration
Option to compose your personal congress programme
Details about the industrial exhibition and symposia
arranged with the industry
Information about NICE
EARLY REGISTRATION DEADLINE: 8th APRIL 2008
T
he European Association of NeuroOncology (EANO) has been in
existence for 15 years and over that time has grown and developed
to include over 600 members from 40 countries. Members include
scientists, neurologists, neurosurgeons, medical and radiation oncolo-
gists, neuropathologists, neuroradiologists, specialist neuro-oncology
nurses, paediatricians and many other groups. Major EANO meetings are
held every two years in Europe and jointly with the American Society for
NeuroOncology and the Asian Society of Neuro-Oncology as part of the
World Federation of Neuro-Oncology. In May 2005, EANO had the pleas-
ure of hosting the Second Meeting of World Federation of Neuro-
Oncology, with the participation of more than 1200 delegates from 35
different countries. In 2006, EANO held their VII meeting in Vienna,
attracting 1,000 participants. In 2008, EANO VIII will be held in
Barcelona. EANO is a full member of the Federation of European Cancer
Societies (FECS) and has developed a section devoted to the education of
neuro-oncology cancer nursing.
The aim of the association is to encourage the multidisciplinary
exchange of knowledge and to implement cooperative studies in the field
of neuro-oncology, including different experts involved in cancer
research, treatment and care.
A special educational program is planned for young researchers from
Central and Eastern Europe with the goal of promoting a high standard
neuro-oncological qualification and favouring a more intense integration
with these countries. We have launched a new website to provide better
communication between members and to allow a forum for discussion
and ideas (www.eano.eu).
If you have an interest in neuro-oncology, we would be delighted to see
you at the next EANO meeting, scheduled in Barcelona on 12th-14th
September 2008. The congress will take place in the “Palau de Congressos
de Catalunya”, a modern, multipurpose building situated in a smart area
of Barcelona. Barcelona is a modern multicultural city and the main
exponent of the Catalan culture and heritage. The city is known world-
wide for its architecture, cuisine, and most importantly, the way people
from Barcelona enjoy life. We hope you will take at least a glimpse of all
these wonders during the Congress.
Registration forms and the programme details are available via
the website. We are looking for active members – please regis-
ter as a member via our website (www.eano.eu) or email us at
secretariat@eano.eu
We look forward to welcoming you in Barcelona.
Es veiem a Barcelona!
Nos vemos en Barcelona!
7-11 June, 2008; Nice, France.
PREVIEW 18th Meeting of the European Neurological Society
12-14 September, 2008; Bacelona, Spain.
PREVIEW European Association for Neuro-Oncology
Conference Report
Neurology: Learning, knowledge, progress and the
future
Teaching programme :
22 practical workshops
Interactive case presentations
Practical sessions in clinical neurophysiology
24 Teaching courses covering all important topics in
Neurology
T
he eighteenth meeting of the European Neurological Society (ENS)
will be held at the Nice Acropolis Congress Centre on June 7-11,
2008. This year we will celebrate the 20th anniversary of the first
meeting of the ENS, which was also held in Nice, in June 1988.
From the very beginning we have pursued the original goals of our
society, namely excellence in the teaching and scientific programmes,
and support to young scientists. The number of participants of cours-
es, symposia and free communications has dramatically increased since
the beginning, but the spirit remains the same. The ENS bets on neu-
rologists in training, with 300 of them invited to attend the meeting.
Younger colleagues are especially interested in teaching courses. 37
courses will be available, including eight practical hands-on sessions
and four teaching courses jointly organised with colleagues of the
American Academy of Neurology. In addition, 22 workshops covering
the different fields of clinical neurology will take place during the
meeting.
The Presidential Symposium will be dedicated to current knowledge
and practical management of coma and locked-in syndrome. On the
following day a symposium will cover behavioural disorders and
dementia with talks on physiopathological bases of behaviour, synucle-
inopathies (Parkinson’s disease, Lewy body); mild cognitive impair-
ment and Alzheimer disease; and tauopathies (Fronto-temporal, PSP,
etc.). A symposium on autoimmune disorders of the nervous system
will include talks on latest developments in multiple sclerosis; autoim-
mune diseases of the neuromuscular junction; pathogenesis and treat-
ment of the Guillain Barré syndrome and immunopathogenesis of
inflammatory myopathies.
On the last day of the meeting there will be a symposium on multi-
ple sclerosis: when to start a treatment, and which treatment with the
best experts in the field from Europe and USA. Finally there will be a
symposium on imaging and management of transient ischaemic attack
(TIA) confronting the diagnosis and risk assessment for TIA, yield of
brain and vascular imaging (MRI, ultrasound etc.); feasibility and effi-
cacy of ultra early evaluation and intervention after a TIA, and the con-
cept of the TIA clinic.
In addition to the symposia, the Scientific Programme includes five
poster sessions and approximately 16 oral sessions of free communica-
tions. We will once again have poster walks to display the posters in a
lively and interesting format. Experts will lead a review of selected
posters promoting discussion with their authors. The selection of sci-
entific papers is based on the review by three experts in the field. On
average 800-900 free scientific papers are selected for presentation at
the meeting. We are looking very much forward to these stimulating
sessions.
Prof G Said, ENS Executive Committee.
Visit the ENS 2008 website www.ensinfo.com
Continuously updated scientific programme
Online registration as well as hotel & tour registration
Option to compose your personal congress programme
Details about the industrial exhibition and symposia
arranged with the industry
Information about NICE
EARLY REGISTRATION DEADLINE: 8th APRIL 2008
T
he European Association of NeuroOncology (EANO) has been in
existence for 15 years and over that time has grown and developed
to include over 600 members from 40 countries. Members include
scientists, neurologists, neurosurgeons, medical and radiation oncolo-
gists, neuropathologists, neuroradiologists, specialist neuro-oncology
nurses, paediatricians and many other groups. Major EANO meetings are
held every two years in Europe and jointly with the American Society for
NeuroOncology and the Asian Society of Neuro-Oncology as part of the
World Federation of Neuro-Oncology. In May 2005, EANO had the pleas-
ure of hosting the Second Meeting of World Federation of Neuro-
Oncology, with the participation of more than 1200 delegates from 35
different countries. In 2006, EANO held their VII meeting in Vienna,
attracting 1,000 participants. In 2008, EANO VIII will be held in
Barcelona. EANO is a full member of the Federation of European Cancer
Societies (FECS) and has developed a section devoted to the education of
neuro-oncology cancer nursing.
The aim of the association is to encourage the multidisciplinary
exchange of knowledge and to implement cooperative studies in the field
of neuro-oncology, including different experts involved in cancer
research, treatment and care.
A special educational program is planned for young researchers from
Central and Eastern Europe with the goal of promoting a high standard
neuro-oncological qualification and favouring a more intense integration
with these countries. We have launched a new website to provide better
communication between members and to allow a forum for discussion
and ideas (www.eano.eu).
If you have an interest in neuro-oncology, we would be delighted to see
you at the next EANO meeting, scheduled in Barcelona on 12th-14th
September 2008. The congress will take place in the “Palau de Congressos
de Catalunya”, a modern, multipurpose building situated in a smart area
of Barcelona. Barcelona is a modern multicultural city and the main
exponent of the Catalan culture and heritage. The city is known world-
wide for its architecture, cuisine, and most importantly, the way people
from Barcelona enjoy life. We hope you will take at least a glimpse of all
these wonders during the Congress.
Registration forms and the programme details are available via
the website. We are looking for active members – please regis-
ter as a member via our website (www.eano.eu) or email us at
secretariat@eano.eu
We look forward to welcoming you in Barcelona.
Es veiem a Barcelona!
Nos vemos en Barcelona!
7-11 June, 2008; Nice, France.
PREVIEW 18th Meeting of the European Neurological Society
12-14 September, 2008; Bacelona, Spain.
PREVIEW European Association for Neuro-Oncology
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