With a $100,000 grant, the FTD Disorders Registry has received a boost from CurePSP, a nonprofit organization working to enhance awareness, education and care for prime-of-life neurodegenerative diseases.
Launched in 2017 by the Association for Frontotemporal Degeneration (AFTD) and the Bluefield Project to Cure FTD — with support from the Tau Consortium — the registry is an electronic database that collects information from individuals diagnosed with frontotemporal dementia (FTD) and related diseases, plus their caregivers, friends and family members. So far, more than 3,200 people have joined.
The funds were awarded through the Prime of Life Brain Initiative, a collaborative effort by CurePSP and the Rainwater Charitable Foundation (RCF), and its Tau Consortium of leading scientists to support studies into disorders associated with the toxic accumulation of tau protein, including FTD. To date, the RCF has contributed more than $500,000 to the registry project.
“CurePSP’s contribution will be helpful in continuing our already successful efforts to enroll patients, and the people who care for them, and to make the registry even more valuable to its scientific users,” Dianna Wheaton, registry director, said in a press release.
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Registry input is expected to inform clinical trial design and lead to a better understanding of FTD’s affect on patients and their families. It also will promote future research, including studies to learn more about the natural history of the relatively little-known group of disorders. The overarching registry goals are treatments and, ultimately, cures.
FTD, which is the most common form of dementia for individuals younger than 60, is expected to increase in prevalence as the population ages. There are several forms of the disorder that lead to slightly varying behavioral, language, and motor symptoms. Such symptoms often cause patients to be misdiagnosed with Alzheimer’s disease or other conditions.
FTD patients, including those with disorders such as behavioral variant frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, primary progressive aphasia, and FTD with amyotrophic lateral sclerosis (ALS), and their friends and caregivers are encouraged to sign up for the registry.
The database is both a contact and research registry. Contact registry enrollment is open to patients and their caregivers, family members and friends in the United States, and international communities. Those registrants will receive periodic research updates and the latest in study opportunities.
As a research registry, participants residing in the United States or Canada will be asked to describe their entire range of FTD-related experiences. Data will be de-identified and used only for research purposes. For more information, visit the registry’s website.
“The FTD Disorders Registry serves as a critical tool to aid investigators in their research, and to assist pharmaceutical companies in recruiting subjects for their clinical trials,” said Lawrence I. Golbe, MD, CurePSP’s director of scientific affairs, adding that the organization plans to further collaborate with the registry through funding and marketing.
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