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The FTD Disorders Registry: contributing to research, providing support and education, and enabling self-advocacy

Dr Dianna Wheaton, MS, PhD, is a genetic counsellor and clinical research scientist with nearly 30 years of experience studying rare diseases. Patient registries have factored heavily in her work, which blends epidemiology and patient-centred research. Dr Wheaton transitioned her research focus to the spectrum of frontotemporal dementia (FTD) disorders to help launch the FTD Disorders Registry (Registry) when a family member experienced symptoms of early onset dementia and struggled to navigate the diagnostic process. 

FTD Disorders Registry
Dr Dianna Wheaton
 How was the Registry founded, and how does it support the FTD community?
FTD Disorders Registry

Founded in March 2015, the Registry was created as an independent, non-profit organisation to advance research into FTD by:

  • promoting and supporting research participation
  • enabling access and sharing of data
  • amplifying the voice of the patients’ and families’ lived experiences 

We envision a world in which research on FTD is a robust, collaborative and effective enterprise among researchers, persons diagnosed, care partners and those at risk. 

Dr Dianna Wheaton
How important are registries and accessible education for the FTD community?
FTD Disorders Registry

Registries play an important role for rare diseases like FTD where less is known about the condition and there are fewer people affected from which to draw information. The Registry was designed to bring together the FTD community. This includes individuals diagnosed, their family members, caregivers and friends, as well as clinicians, scientists, patient advocacy groups and the pharmaceutical and biotech industry.

 A registry can serve as a powerful tool to organise, educate and engage the patient community, and in its best iteration it is a true collaboration where information exchange is bi-directional. 

Dr Dianna Wheaton
What are the benefits of individuals joining the Registry, and what advice would you give to those who may be unsure about joining? 

Joining the Registry is an act of self-advocacy and enables direct participation in research with few barriers. The Registry provides one location to collect and share de-identified data, promote research studies, and refer potentially eligible registrants to external studies. 

We designed the Registry to be the ‘go-to’ place for individuals diagnosed, and their families, to access information about FTD research, as well as participate in studies.

Dr Dianna Wheaton

Concerns regarding joining the Registry usually pertain to privacy and time demands of participation. The Registry is an online, regulatory compliant platform that employs multiple methods to protect privacy and confidentiality including de-identifying data by using coded numbers. We also offer two levels of participation: the Contact Registry allows registrants to receive general FTD news updates and the Registry newsletter and, for those willing to participate more fully, they can consent to the Research Registry where they respond to surveys and receive custom study notices.

How is the Registry contributing to FTD research?
FTD Disorders Registry

Registry enrolment launched in 2017. Since then, more than 4,500 individuals have registered, representing persons diagnosed with FTD, biological family members and spouses/caregivers. Nearly 50% of registrants elect to participate in Registry research by filling out surveys that describe the lived experience of a diagnosis. Survey topics include demographics, disease impact and research readiness. 

The Registry also partners with FTD researchers to promote their studies by highlighting them with listings on our Find A Study webpage , social media messages and referral emails to registrants. Additionally, we can administer new or existing surveys that are of interest to the FTD scientific community.

What research is the Registry currently involved in?

We are currently providing some level of study promotion support through a variety of general and targeted channels to 16 research studies and clinical trials. Registry research participants specifically benefit by receiving custom referral email notices connecting them with applicable studies. The survey data we collect is shared with the lay and research community to inform and educate through newsletter articles, infographics and meeting presentations.

The FTD Registry’s poster, ‘Disease Impact of FTD’, provides a summary of data collected from the FTD Registry’s Disease Impact Survey. It was presented at the Alzheimer’s Association International Conference in July 2021, and will be submitted this fall for consideration as an encore poster at the American Academy of Neurology’s Meeting in April 2022. 

To access the poster, follow the download button below:

What are your goals for the future of the Registry and supporting the FTD Community?

The Registry is growing at a rate of 1,000 new registrants per year. To meet the needs of the FTD community, we must amplify our efforts through increased engagement and expanded geographic scope. There is an urgent need to find treatments and cures for this group of devastating neurodegenerative disorders. Partnering together we can facilitate and accelerate the scientific advances.

For more information about the FTD Disorders Registry please click the logo and buttons below:

Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly and Company, is dedicated to developing gene therapy-based treatments with the potential to slow or stop the progression of neurodegenerative conditions such as frontotemporal dementia, Gaucher disease, and genetic forms of Parkinson’s disease. To learn more about Prevail, visit their website. 

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