Michael J. Fox Foundation Analysis Reveals Gaps between Research Volunteers and Parkinson's Clinical Studies

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Fox Trial Finder Analysis Sheds Light on Parkinson’s Studies and Volunteers

Posted by  Christina Brdey, February 23, 2015

The first peer-reviewed paper on Fox Trial Finder — MJFF’s online matching clinical trial tool — published in the Journal of Parkinson’s Disease profiles a rich database of volunteers poised to contribute to breakthroughs in Parkinson’s treatment.

Fox Trial Finder (FTF) helps bridge the gap between the Parkinson’s community and the clinical trials that need them. Users (both those with and without Parkinson’s) create a profile and are matched with local studies looking for volunteers like them.

“I strongly believe that those of us with Parkinson's disease owe it to our children and grandchildren to do whatever possible to find better treatments and, hopefully, a cure. The only way is to participate in clinical research,” said user Gary Rafaloff of Malboro, New Jersey. “Fox Trial Finder is, by far, the easiest and most efficient means of finding studies that are most suitable for each volunteer's personal requirements and interest.”

The paper reports on MJFF’s analysis of FTF registrants (26,231) and studies (329 at 627 sites) in the United States as of July 2014. Among baseline findings:

• Family History – Of 19,243 registrants with Parkinson’s, only 12 percent listed an immediate family history of the disease — not unexpected given that the vast majority of Parkinson’s cases are idiopathic (cause unknown). In contrast, 49 percent of control registrants reported a familial connection. This finding highlights the motivating nature of a family connection for spouses, adult children and other caregivers who can play a key role in research as control volunteers.
• Time of Diagnosis – The average time since diagnosis was 5.7 years and the average age at diagnosis was 58 years. Less than five percent reported young-onset Parkinson’s. Interestingly, time since diagnosis did not appear to be a major eligibility factor in the listed studies.
• Disease Progression – Most studies were recruiting for patients with a Hoehn & Yahr score (a measure of disease progression) of 1 or 2, but even those with a score of the highest 5 were eligible for 66 percent of listed studies. Patients who had undergone deep brain stimulation were eligible for 73 percent of studies.
• Geographic Location – Analysis revealed a geographical imbalance of volunteers and studies. Only 10 of the top 20 areas of study sites were also in the top 20 areas of volunteers. Some major areas of research — Portland, Oregon; Cleveland, Ohio; Boston; and Birmingham, Alabama — were not in the top 20 of patient saturation. Such distribution makes the case for increased outreach to potential volunteers in hotbeds of research and for tele-research methods to involve willing participants in areas without recruiting studies.
• Age Eligibility – The average minimum age for study inclusion was 21 while the average maximum age was 95.

Since its launch in 2011, FTF has registered more than 40,000 potential research volunteers and lists nearly 450 ongoing Parkinson’s studies in nine countries from Australia to Germany. What’s more important is that both volunteers and study sites are engaging with each other through the tool.

“Fox Trial Finder is a very user-friendly tool and has increased the number of patients screened and enrolled into studies I work on,” said Grace Bwala, a research coordinator at Massachusetts General Hospital.

https://www.michaeljfox.org/foundation/news-detail.php?fox-trial-finder-analysis-sheds-light-on-parkinson-studies-and-volunteers