A description of the process of recruitment for research studies investigating the genetics of psychotic illness

Abstract

Collecting biometric data on probands and family members is pivotal for advancing the understanding and treatment of any medical disorder with genetic contributions. The process of recruiting probands with psychosis and their family members for genetic studies has proven to be challenging. We present the recruitment strategies of two sites that are collaborating in genetic studies. We review details of referral sources at these sites. Of 69 participants recruited from the University of Pittsburgh, 23% were self-referrals, 30% were encouraged by family, and 47% were encouraged by clinicians. Of 48 probands from the University of Pennsylvania, 6% were self-referrals, 21% were encouraged by family, and 73% were encouraged by clinicians. Qualitative data from focus groups are reviewed. Strategies that helped to facilitate recruitment and foster community networking are discussed. This preliminary study has broad implications as a potential model for collaboration among patient support groups, family groups, clinicians, and researchers.