Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey

Abstract

We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023- 2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connectw contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.