In praise of long-term prospective data collection: Questions and perspectives

Abstract

In summary, the observations of the UKHCDO make an important contribution to the growing literature on inhibitors. This report is an excellent example of the valuable information to be obtained from long-term prospective national data collection, in spite of several limitations inherent in the methodology. However, as demonstrated again in this report, even large national databases lack the capacity to collect sufficient data on the less common hemophilia B and its complications. In order to make the required definitive observations specific to this disease, internationally collaborative data collection and analysis will continue to be a necessity. © 2004 International Society on Thrombosis and Haemostasis.