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Research Highlight: Experiences with Comorbid FTD and ALS
The FTD Insights Survey is the largest community survey of people with lived experience of FTD disorders. This survey queried on topics that included the diagnostic journey, disease symptoms, and their impacts on daily life. Shana Dodge, PhD, AFTD’s Director of Research Engagement, used data from the FTD Insights Survey in a poster session at…
Read MoreQuick Question December 2024 Result: What kind of non-medical interventions have made a positive difference for the person diagnosed with an FTD disorder?
500 people answered the FTD Disorders Registry’s December Quick Question about what type of non-medical interventions have made a positive difference for the person diagnosed with an FTD Disorder.
Read MoreQuick Question November 2024 Result: In what areas do you feel people from families with genetic FTD need the most support?
The FTD Disorders Registry’s November Quick Question received 396 responses about the type of support families with genetic FTD need.
Read MoreQuick Question October 2024 Result: How much do you feel you (or your loved one’s) participation in the Registry could contribute to advances in FTD research?
552 people answered the FTD Disorders Registry’s October Quick Question about how much they felt participation in the Registry could contribute to advances in FTD research.
Read MoreResearch Highlight: Exploring Families’ Interest in Understanding Genetic FTD
Kim Jenny, Manager of Genetic Initiatives for the Association for Frontotemporal Degeneration (AFTD), presented the results as a poster at the International Society for Frontotemporal Dementias (ISFTD)’s annual conference.
Read MoreResearch Highlight: Understanding Social Risk Factors in Research Participation
FTD Disorders Registry Program Manager and ALLFTD Liaison Sweatha Reddy presented a poster on Understanding Social Risk Factors in Research Participation at the Alzheimer’s Association International Conference in Philadelphia, PA.
Read MoreQuick Question September 2024 Result: Are you a current caregiver for someone with an FTD disorder?
698 people answered the FTD Disorders Registry’s September Quick Question about whether they were a current caregiver for someone with an FTD disorder.
Read MoreQuick Question August 2024 Result: Would you be willing to participate in a remote research study asking about their symptoms and treatment prescribed for FTD?
460 people answered the FTD Disorders Registry’s August Quick Question about whether they would be willing to participate in a remote research study asking about their symptoms and treatment prescribed for FTD.
Read MoreQuick Question July 2024 Result: Have you joined the new Registry platform?
405 people answered the FTD Disorders Registry’s July Quick Question about participation in the new Registry platform.
Read MoreQuick Question June 2024 Result: How many languages do you speak?
872 people answered the FTD Disorders Registry’s June Quick Question which asked how many languages do you speak.
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