Objective: Determine feasibility of digital recruitment strategies, centralized screening, and a dedicated referral coordinator to enroll participants with LRRK2 or GBA mutations into PPMI, a longitudinal observational study of biomarkers of PD progression

Background: Recruitment in clinical research is a common challenge, further complicated when aiming to enroll carriers of rare genetic mutations. PD-related LRRK2 or GBA mutations are more prevalent among individuals of Ashkenazi Jewish descent. PPMI initiated new recruitment and enrollment strategies focused on this population in its efforts to enroll 500 PD and unaffected carriers with these mutations.

Methods: The strategy combined reaching potential research participants through social media, genetic screening via at-home saliva collection, and a central study coordinator. IRB-approved ads targeted to relevant populations on Facebook directed interested participants to an on-line survey. Those who met eligibility criteria for genetic testing were mailed a saliva collection kit for DNA isolation, and screening of specific LRRK2 or GBA mutations was performed at a central lab. All participants received genetic counseling to disclose test results. Participants confirmed to carry a mutation were referred to a central study coordinator, who talked to participants about the longitudinal PPMI assessments, assisted sites and subjects in scheduling study visits, and coordinated subject travel.  

Results: Social media ads from Jan to Sept 2016 resulted in 2564 eligible survey responses; 2132 (83%) qualified to receive a saliva kit; 257 mutation carriers were referred to the central coordinator; 157 (61%) reported a social media-related referral source. Average cost of identifying an eligible participant from social media was $34 vs $215 for education events and $344 for traditional media outreach. Average time from referral to enrollment was 92 days vs 182 days prior to the implementation of a central coordinator. 

Conclusions: Use of social media and centralized screening can be an efficient and cost-effective strategy for identifying individuals at-risk for carrying certain genetic mutations. A central coordinator to facilitate visit scheduling and travel, particularly in rare populations who may not be proximal to a clinical research site, can enable more timely enrollments.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/innovative-recruitment-strategies-accelerate-enrollment-of-genetic-mutation-carriers-in-the-parkinsons-progression-markers-initiative-ppmi/