Challenges in the study of individuals at risk for Parkinson disease

Identifying individuals at high risk for developing neurodegenerative disease opens the possibility of conducting clinical trials that intervene at an earlier stage of neurodegeneration than has been possible to date, and in doing so hopefully improves the odds of efficacy for interventions aimed at slowing or stopping the disease process. The long prodromal phase of Parkinson disease presents opportunities and challenges to establishing cohorts of at-risk individuals. Recruiting people with genetic variants conferring increased risk and people with REM sleep behavior disorder currently constitutes the most promising strategies, but multistage screening of the general population may also be feasible capitalizing on known risk factors and prodromal features. This chapter discusses the challenges involved in identifying, recruiting, and retaining these individuals, and provides insights into possible solutions using examples from studies to date.