CASE STUDY NO. 8
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A PPMI Participant Webpage allows centralized access to digital versions of the participant newsletters and recordings of study update calls.
+ + Express appreciation through a thank-you booklet: Letters from members of the Parkinson’ s community, researchers, MJFF staff, statisticians and study coordinators were published in a print and digital booklet to thank and honor volunteers for their participation. Collecting the personal reflections of the many individuals involved in or impacted by PPMI is a meaningful way to empower participants and remind them of the larger cause they are tied to.
+ + Inform participants of study results through newsletters, update calls and a webpage: The majority of study volunteers( 90 percent) want to receive results from the clinical trial in which they participated. Because there is ongoing analysis of PPMI data and continued follow up of participants, study results are shared on a rolling basis. Using familiar channels to communicate study progress is a great way to close the loop with study participants.
Putting it All Together: Host an Event
PPMI staff and study leadership also show their commitment to the study’ s success, and their appreciation for participants, by hosting annual study update luncheons and dinners that incorporate all the tenets of retention. Having an in-person get together gives participants the chance to meet other volunteers and share experiences of living with PD and taking part in PPMI. During these events, local site staff present study progress and provide relevant results from ongoing data analysis. Foundation staff also attend and, together, all study stakeholders thank participants for their time and commitment.
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Getz, Kenneth.“ Events That Have Shaped Study Participant Protection.” The Gift of Participation: a Guide to Making Informed Decisions about Volunteering for a Clinical Trial, 2nd ed., CISCRP, Center for Information & Study On Clinical Research Participation, 2014, pp. 158 – 158
40 Accelerating Clinical Trials: Best Practices for Recruitment and Retention