Quick Questions 2026

Quick Questions is an FTD Disorders Registry initiative that was created to learn more about people’s thoughts and feelings on various research topics.

Each month the Registry posts an FTD research-related question. Some questions are directed to persons diagnosed with frontotemporal degeneration (FTD) and/or their biological family members. Other times the question may be directed to caregivers and/or all family members. People are encouraged to answer if a question applies to them.

The Quick Questions survey uses the same secure platform that the Registry uses for its registration process. Answers are anonymous. 

JANUARY: IF YOU COULF IMPROVE UP TO 3 ASPECTS OF CARE FOR YOURSELF OR THE PERSON WITH FTD, WHAT WOULD THEY BE?

473 people responded.
The highest response was access to specialists with FTD experience with 20.4%.

FEBRUARY: HAVE YOU (OR YOUR LOVED ONE) EVER HAD CONTACT WITH THE CRIMINAL JUSTICE SYSTEM BECAUSE OF BEHAVIOURS OR SYMPTOMS RELATED TO FTD?

534 individuals responded, providing insight into how symptoms of FTD can sometimes intersect with law enforcement and legal systems that may not recognize these behaviors as part of a neurological condition.

MARCH: HOW LONG DID IT TAKE TO RECEIVE A FORMAL DIAGNOSIS AFTER FIRST SYMPTOMS ?

A total of 533 community members shared their experiences, offering valuable insight into the diagnostic journey. These responses help deepen our understanding of the challenges individuals and families face and highlight opportunities to improve earlier recognition and access to care.

APRIL: WAS THE PERSON WITH FTD EVER REFERRED TO PALLIATIVE CARE THROUGHOUT THEIR ILLNESS?

409 people responded. Sixty-five percent of respondents said no. Only 35% of respondents said the person with FTD had received a palliative care referral. The remaining results, including additional details and analysis, will be used in a future abstract and shared here after being presented.

MAY: HOW OFTEN DO YOU INTERACT WITH THE HEALTHCARE SYSTEM DUE TO FTD-RELATED NEEDS?

A total of 496 people responded. Responses showed that healthcare interactions are a regular part of life for many in the FTD community.

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The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

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