CA SE STUDY NO. 8
Retention Strategies for the
Parkinson’s Progression Markers
Initiative
To complete a study, it is critical to retain study participants.
Participant attrition has the potential to interfere with the
scientific validity of the study and distort data designed to
measure drug efficacy and safety. According to Forte Research: 27
+ + Eighty-five percent of clinical trials fail to retain enough
participants
+ + The average dropout rate across all clinical trials is
30 percent
Retention is an important element of the Parkinson’s Progression
Markers Initiative (PPMI), a landmark, longitudinal, observational
study sponsored by The Michael J. Fox Foundation. PPMI
(ppmi-info.org) aims to find reliable and consistent biomarkers
for Parkinson’s disease (PD) progression by studying cohorts of
Parkinson’s patients (de novo idiopathic PD and PD-manifesting
genetic mutation carriers), populations at risk for PD (non-
manifesting genetic mutation carriers and subjects at risk due to
REM sleep behavior disorder or hyposmia) and controls without
PD. Participants in PPMI commit to long-term participation,
providing biospecimens (e.g., blood, urine, spinal fluid), and
undergoing multiple neuroimaging, clinical and behavioral
procedures, and assessments over a period of at least five years.
The study launched in 2010, and since that time, approximately
1,500 individuals have enrolled. PPMI’s retention rate has
consistently held strong, year after year, at about 90 percent.
To ensure steady participation and to prevent attrition, PPMI
weaves together four key tenets of retention, cultivated and refined
since study launch: 1) facilitate participation; 2) communicate
study progress; 3) express appreciation; and 4) inform participants
of study results.
+ + Facilitate participation through travel concierge services:
PPMI study leadership prioritized and simplified long-term
participation in large part because individuals carrying
27
28
specific PD-linked genetic mutations live across a wide
geographical area. To facilitate volunteers’ continued
participation, PPMI cultivated a boutique experience for
them and their care partners. Prospective and enrolled PPMI
participants are given the option for complimentary round-
trip transportation between their home and appointments
at two “super sites” that have the capacity to handle a high
volume of study volunteers. A third-party vendor manages all
logistical planning, including participants’ accommodations,
meals, and travel to and from study visits. This door-to-door
service reflects the value PPMI study leadership puts on
participation and participants.
+ + Communicate study progress through newsletters, update
calls and a centralized webpage: Reminding participants of
the bigger picture is a meaningful way to engage them in the
collective success of a study. According to a 2017 report by
The Center for Information and Study on Clinical Research
Participation, 28 the number one reason individuals choose
to participate in clinical research is to help advance science
or the treatment of a disease or condition. Given this initial
motivation, updates on study progress and contributions to
the field will facilitate continued engagement. In PPMI, study
progress is communicated in several ways:
– – PPMI newsletters provide high-level updates on the
study (e.g., study enrollment progress, how the data and
samples collected are being used for research) as well
as interviews or profiles of study participants and/or
study staff.
– – PPMI update calls, which are scheduled throughout the
year, feature presentations and Q&A sessions with study
researchers and study team members.
Continued on page 40
https://forteresearch.com/news/infographic/infographic-retention-in-clinical-trials-keeping-patients-on-protocols/
https://www.ciscrp.org/download/2017-perceptions-insights-study-the-participation-experience/?wpdmdl=8770
Chapter
Chapter
3 — 4—
Building
Crafting
a Recruitment
a Retention Strategy and Toolkit
39