FTD Disorders Registry

Thank you, #AAIC2025! We loved connecting with researchers, clinicians & advocates at our booth. Your curiosity and commitment to advancing #FTD understanding inspire us. Let’s keep moving toward earlier diagnosis and better care. #FTDRegistry #FTDResearch #EndFTD

Join us for a free webinar on Wednesday, August 13, 2025 to explore the diagnostic journey for frontotemporal degeneration (FTD) and how we can improve detection and referral. Free CME and CEC credits available!

Register here: events.zoom.us/ev/AlPqObBF8...

#endFTD #neurology

Great connecting with the team from Cure MAPT FTD today! #AAIC2025

Join Registry Director Carrie Milliard today at #AAIC2025 from 3:30–4:15 PM at Poster #480.

She will share our work on the challenges families experience during the diagnostic journey for behavioral variant frontotemporal dementia (bvFTD) using data from the Registry.

#EndFTD

We’re grateful to be able to share the FTD Disorders Registry's work at #AAIC2025! Stop by during today’s poster sessions to connect with Registry Director Carrie Milliard. We’re always eager to exchange ideas and insights.

#endFTD #FTD #FTDResearch

Great to see Devon Chenette of Alector present at #AAIC2025! Her poster, "Genetic testing rates of individuals diagnosed with FTD and close biological relatives assessed in the FTD Insights Survey," highlights important findings made possible with data from the FTD Disorders Registry. #endFTD

Great to see the team behind the Progranulin Information Navigator by the Bluefield Project at #AAIC2025! This resource raises awareness of GRN-specific trials & improves access to genetic testing & counseling. Bluefield is also a cofounder of the FTD Disorders Registry.

#endFTD #GRN #FTDResearch

Now Live: FTD Disorders Registry Researcher Portal

Access secure, deidentified data from real-world lived experience of #FTD disorders. Design studies. Estimate recruitment. Accelerate progress.

Learn more: ftdregistry.org/for-research...

#FTDResearch #Neuroscience #EndFTD #AAIC2025

The FTD Disorders Registry and @theaftd.bsky.social are back at Booth 521 today at #AAIC2025! Stop by! We look forward to connecting and sharing how we're working together to advance #FTDresearch. #EndFTD #FTD

Come say hi to FTD Disorders Registry Director Carrie Milliard at Booth 521 today at #AAIC2025!

Learn how the FTD Disorders Registry is accelerating research and supporting scientists with real-world data.

#FTDRegistry #FTDResearch #EndFTD #Neuroscience

Shana Dodge & Penny Dacks are on the ground at #AAIC2025! Visit Booth 521 to learn how the FTD Disorders Registry supports your research with data, cohort tools & recruitment resources. Let’s move #FTDResearch forward together! #EndFTD #FTD #DementiaResearch

This sketch is great!

Coming to #AAIC2025? Visit Booth 521! The FTD Disorders Registry supports researchers with de-identified data and tools for study design, cohort discovery, and recruitment. Let’s move FTD research forward together. #EndFTD #FTDResearch #FTD

New Study Explores How FTD-Linked Genes May Shape Brain - FTD Disorders Registry Researchers have long understood that frontotemporal degeneration (FTD) is a neurodegenerative disease that begins in adulthood. But new questions are

Can FTD-linked genes shape brain development before symptoms appear?

A new study is exploring this question in families affected by genetic #FTD. Now enrolling across Canada and Europe.

ftdregistry.org/press/new-st...

#endFTD #FTDResearch

The Role of Longitudinal Data in Understanding FTD Progression - FTD Disorders Registry Learn how collecting longitudinal data helps researchers track FTD progression over time and develop more effective diagnostics and treatments.

Why does longitudinal data matter in #FTDresearch?

Tracking changes over time helps researchers understand how the disease progresses and how to treat it more effectively.

See how your data makes a difference:
ftdregistry.org/press/the-ro...

#FTD #endFTD

Thank you to everyone who answered questions about quality of care in last month's Quick Question. This month, we are asking about sleep challenges. To answer and see last month’s results, visit here: ftdregistry.org/quick-questi...

#endFTD

What Happens After You Join the FTD Disorders Registry? - FTD Disorders Registry Learn what happens next after you make the decision to join the FTD Disorders Registry.

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: ftdregistry.org/press/what-h...
#EndFTD

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.

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: rtiorg.zoom.us/webinar/regi...

#endFTD #FTD #caregiving

FTD Registry Launches New Researcher Portal to Accelerate Study Recruitment - FTD Disorders Registry The FTD Disorders Registry has launched a new Researcher Portal to accelerate study recruitment.

We have launched our new Researcher Portal. It is a powerful tool to help investigators access de-identified data and request Registry support to accelerate study recruitment.

Learn how it can help advance FTD disorders research: ftdregistry.org/press/ftd-re...

#EndFTD #FTDResearch

Accelerating FTD Research: How the Registry Supports Study Recruitment - FTD Disorders Registry Learn how the FTD Disorders Registry helps accelerate research by connecting willing participants with studies focused on FTD disorders.

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: ftdregistry.org/press/accele...

#EndFTD #FTDdisorders #research

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: ftdregistry.org/find-a-study...

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: ftdregistry.org/find-a-study... #ALS #FTD #research

Many people have questions about genetic testing. Genetic counselors can help you better understand your options.

Learn more about why it is important:
ftdregistry.org/press/why-yo...

#EndFTD #FTDdisorders

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: ftdregistry.org/find-a-study...

Inside the Penn FTD Center - FTD Disorders Registry The FTD Disorders Registry joined FTD community advocates for a behind-the-scenes tour of the Penn FTD Center,

The Registry joined representatives from Cure GRN, @curemaptftd.bsky.social, Cure VCP, & the Progranulin Information Navigator for a visit to @pennftdc.bsky.social. It was a powerful reminder of how research & community collaboration are driving progress to #EndFTD.

ftdregistry.org/press/inside...

The recording of our AFTD Education Conference session is now live: Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research.

Hear from key stakeholders sharing their experience: youtu.be/WpitjItAd6w?...

#EndFTD

How Registry Data Is Advancing FTD Research—and Why It Matters - FTD Disorders Registry The FTD Disorders Registry is a powerful resource for scientists studying FTD disorders. Learn more about how your de-identified data is used.

Learn how information shared by Registry participants is helping researchers better understand frontotemporal degeneration — and why it matters.

Read more: ftdregistry.org/press/how-re...

#endFTD #FTD #ftdresearch

FTD: The Other Side of ALS  - FTD Disorders Registry When people hear "ALS," they often think of Lou Gehrig, ice bucket challenges, and the devastating loss of motor function that characterizes Amyotrophic

#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: ftdregistry.org/press/ftd-th...

Thank you to everyone who shared their experience with respite care in last month's Quick Question. This month, we're asking about your diagnostic journey. To answer and see last month's results, visit here: ftdregistry.org/quick-questi...