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Milestone 4.P

AD Related Dementias – Specific

Create an international FTD clinical trial network.

Success Criteria

  • Develop a patient registry for FTD clinical studies and a centralized database for de-identified clinical, genetic and biomarker data that can be shared with the broader research community to refine disease models, clinical endpoints, and trial design. Focused FTD clinical trial platforms should be established. Underserved and minority group representation within the clinical trial registry should reflect population demographics. Coordinate with related existing national and international efforts.

Summary of Key Accomplishments

In 2019, NIA and the NINDS co-funded the ALLFTD Study, a comprehensive clinical research network that is establishing the natural course of the various forms of FTD and will establish a baseline for clinical trials. In partnership with patient advocacy groups, a patient registry was launched (FTD Disorders Registry) and is fully integrated into the ALLFTD Study. The ALLFTD study also has collaborations with several industry partners developing potential therapies now poised for clinical trials. To increase the inclusion of underrepresented groups, the ALLFTD study has added sites in areas with enriched populations of race and ethnic minorities, is translating study materials into several languages, and conducted focused outreach efforts. ALLFTD is a formal partner with the international FTD Prevention Initiative (FPI).

This information is current as of July 2022.

Research Implementation Area
AD Related Dementias - Specific

Accomplishments/Implementation Activities

Funding Initiatives

Research Programs and Resources

Relevant Recommendations

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