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