Frustrated by slow and low clinical trial participant enrollment, the Michael J. Fox Foundation has created a new resource to help Parkinson’s clinical studies recruit and retain volunteers.
“We believe it is our obligation to foster partnerships among patients, families and researchers to bring more people with the disease into Parkinson's clinical trials by educating potential study participants and supporting trial teams' recruitment efforts,” said the foundation’s CEO, Todd Sherer, Ph.D., in a statement.
Funded by companies like Pfizer and Acadia, the new “Parkinson’s Clinical Trial Companion” education suite has two parts. One facing potential participants aims to educate patients and their families. It’s a 52-page downloadable guide that answers some basic questions covering different aspects and stages of clinical research. Intended as an international resource, the patient guide will be made available in Spanish, French, German and Italian.
For clinical trial researchers, another manual disseminates knowledge on optimizing clinical trial design, including how to map out the trial journey for participants, engage key stakeholders, overcome transportation barrier and site selection, and utilize new technologies like social media to promote awareness, etc. The foundation also provides a toolkit with 34 templates for such trial needs as digital marketing, one-pager informational flyers and other tools to help recruitment and retention.
As Tanya Simuni, M.D., professor of neurology at Northwestern University Feinberg School of Medicine put it, the resource pack “offers trial teams a step-by-step, patient-centered approach to support progress in Parkinson's research through practical resources designed to help streamline participant enrollment and ensure that volunteers continue through to the trial's end.”
Dedicated to accelerating Parkinson’s research, the Michael J. Fox Foundation has put out several tools to get more people onboard with clinical research. In 2012, it launched Fox Trial Finder, an online enrollment tool matching those with or without Parkinson's to clinical trials in their area. It is also behind an online study called Fox Insight, which collects patient-reported data to help the scientific community better understand the disease and patients’ unmet needs. So far, over 18,000 people have participated in the research, according to its website.