Priority Area 1: Diagnosis and Treatment
Far too often, receiving a correct diagnosis of FTD is a frustrating, multi-year process rife with false leads and false hope. On average, it still takes more than 3.5 years to get an accurate diagnosis. Compounding this challenge, there are currently no approved disease-modifying therapies for any form of FTD.
How can we pave a path forward?
By advancing diagnosis, treatments, and cures for all.
How will AFTD take action over the next three years?
Improve the clinical-trial readiness of FTD by cultivating and empowering a research-ready community
- Provide educational resources to empower people to make informed decisions about participation in clinical research, including genetic counseling, brain donation, natural history studies, and non-pharmacological interventions
- Amplify the priorities and values of people with lived experiences, as they relate to clinical trials and drug development
- Expand awareness of the importance of research participation among all people with lived experience
- Leverage the FTD Disorders Registry to connect people to research participation opportunities that match their interests
- Strengthen the Registry and other resources to enable the feasibility of planning and executing clinical trials
- Support the development of clinical investigators and sites to participate in trials
Accelerate the development of scientific tools to improve access to diagnosis and to enable efficient and informative clinical trials
- Fund exploratory clinical trials to test prospective therapies and innovative trial designs
- Support the development of biomarkers and other tools to screen, diagnose, and better understand subgroups of people impacted by FTD
- Leverage the FTD Disorders Registry to document factors that influence access to diagnosis
- Convene and partner with regulators, trial sponsors, site investigators, funders, advocates, and community members around the enabling of clinical trials and drug development
- Support both the development of and access to tools that enable clinical trials, including longitudinal data, disease progression models, biomarkers, and outcome measures
- Strengthen the partnership between the Registry and the ALLFTD2 study to help improve operational efficiency, reduce site burden, and enhance participant engagement for the natural history study
Accelerate scientific progress for all families affected by FTD
- Design research grant programs with intentionality to meet the needs of people from a variety of backgrounds
- Improve the capacity of clinical trials to recruit and retain people across FTD disorder types, geography, and demographic backgrounds
- Engage with researchers across career stages, geographic locations, demographic backgrounds, and scientific expertise
- Continue to learn and amplify the lived experiences of all people impacted by genetic FTD
Increase the number of health professionals who can recognize and diagnose FTD or provide a referral to a clinician who can
- Develop an AFTD-branded designation to recognize diagnostic centers with FTD expertise
- Leverage existing dementia networks and systems in the clinical/dementia ecosystem to advance diagnosis
- Increase opportunities to offer Continuing Education Credits (CME/CEC)
- Develop targeted education to healthcare professionals providing diagnosis, care, and support
Cultivate a robust and broad pipeline of scientific leaders
- Convene researchers to strengthen connections and advance research insights
- Provide funding and mentorship for early career researchers
- Collaborate with researchers from related fields, including ALS, Alzheimer’s, and Parkinson’s, to strengthen approaches to leverage and accelerate scientific progress
- Provide information to help researchers identify and access the resources that they need
- Deepen and broaden engagement with medical and scientific leaders through the AFTD Medical Advisory Council
Strategic Plan Highlights
Download the full AFTD Strategic Plan 2025-2028
