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FTD Registry Profile
FTD Registry

@EndFTDregistry

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The Registry is an online database to collect information from those affected by all types of frontotemporal degeneration (FTD).

Joined March 2016
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@EndFTDregistry
FTD Registry
2 days
Wondering what happens after you join the FTD Disorders Registry?. You get instant access to research opportunities + resources to help drive FTD research forward. Learn more: #EndFTD
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@EndFTDregistry
FTD Registry
4 days
RT @AFTDHope: A Chinese study identifies predictors of psychological well-being and self-rated health in care partners of people with #FTD….
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@EndFTDregistry
FTD Registry
7 days
As we mark this Fourth of July, we honor the spirit of community and resilience that brings us together. Today, we also hold close the families and individuals impacted by FTD, whose strength and hope inspire progress every day. Wishing everyone a safe, restful holiday.
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@EndFTDregistry
FTD Registry
8 days
Join the National Alzheimer's and Dementia Resource Center, the Administration for Community Living, and RTI International for a free webinar this August 12th. Learn more and sign up: #endFTD #FTD #caregiving
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@EndFTDregistry
FTD Registry
10 days
We have launched our new Researcher Portal. It is a powerful tool to help investigators access de-identified data & request Registry support to accelerate study recruitment. Learn how it can help advance FTD research: #EndFTD #FTDResearch.
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@EndFTDregistry
FTD Registry
16 days
Finding participants is a big challenge in FTD disorders research. Without those connections, studies stall. The Registry helps link researchers and research-ready participants to speed discovery. Learn more: #EndFTD #FTDdisorders #research.
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@EndFTDregistry
FTD Registry
18 days
Care partners are wanted for a study that explores the challenges care partners face and how to improve resources and support systems for those caring for individuals with frontotemporal degeneration (FTD) and apathy. Learn more:
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@EndFTDregistry
FTD Registry
21 days
Anyone with an interest #FTDdisorders research can join the Registry. By joining the Registry, you're helping drive research, improve care, and move us closer to effective treatments and a cure. Numbers have power. Be part of the progress: #endFTD
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@EndFTDregistry
FTD Registry
23 days
Researchers at Emory are recruiting for the PATH Study — a 15-min survey for people with a family history of ALS, FTD, Ataxia, or Huntington’s (and no current symptoms). Must have a known mutation or a relative who does. Learn more:
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@EndFTDregistry
FTD Registry
25 days
Thank you to everyone who answered questions about the diagnostic journey in last month's Quick Question. This month, we are asking about the quality of care you or your loved one has received for FTD. To answer and see last month’s results, visit here:.
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@EndFTDregistry
FTD Registry
28 days
The PREVENT ALL ALS Study is recruiting people with a family history of ALS or FTD — including known gene carriers and close relatives. You may qualify even without prior genetic testing. Learn more: #ALS #FTD #research
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@EndFTDregistry
FTD Registry
30 days
Many people have questions about genetic testing. Genetic counselors can help you better understand your options. Learn more about why it is important:. #EndFTD #FTDdisorders
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@EndFTDregistry
FTD Registry
1 month
The University of Colorado Multidisciplinary Center on Aging is seeking participants for a research study about caregiver perspectives. They are seeking individuals aged 18+ who are providing care to a person living with dementia or FTD. Learn more:
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@EndFTDregistry
FTD Registry
1 month
RT @AFTDHope: Understanding whether the FTD in your family has a genetic cause can provide clarity, guide care planning, and offer opportun….
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@EndFTDregistry
FTD Registry
1 month
The FTD Disorders Registry joined representatives from Cure GRN, @CureMAPTFTD, @CureVCP, & the @progranulin_nav for a visit to @PennFTDCenter. It was a powerful reminder of how research & community collaboration are driving progress to #EndFTD.
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@EndFTDregistry
FTD Registry
1 month
RT @AFTDHope: AFTD invites healthcare professionals to a webinar on June 26 at 12 pm ET on Speech Language Therapy: A Promising Practice in….
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@EndFTDregistry
FTD Registry
1 month
RT @AFTDHope: A recent study finds that a profile of blood-based cytokines could potentially serve as a biomarker for neuroinflammation in….
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@EndFTDregistry
FTD Registry
1 month
The recording of our @AFTDHope Education Conference session is now live: Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research. Hear from key stakeholders sharing their experience: #EndFTD
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@EndFTDregistry
FTD Registry
1 month
Learn how information shared by Registry participants is helping researchers better understand frontotemporal degeneration — and why it matters. Read more: #endFTD #FTD #ftdresearch
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@EndFTDregistry
FTD Registry
1 month
#FTD and #ALS may look different, but they share biology, burden, and hope. Understanding the link is key to building a future where no family faces these disorders alone. Explore how these two conditions intersect:
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