In exciting news for the FTD research community, the ALLFTD study has received funding from the National Institutes of Health for the next phase, currently referred to as ALLFTD2. ALLFTD is a natural history study, which collects critical data to examine the progression of FTD over time – supporting better disease detection, clinical trial infrastructure, and is a key resource for advancing FTD research worldwide.

Natural history studies like ALLFTD and ALLFTD2 generate comprehensive data, such as biosample collection, and imaging and clinical data, that is important for FTD scientific discoveries and clinical trial development. The ALLFTD and ALLFTD2 research studies involve specialized research groups, all focused on the most current implementation of scientific advances, and are responsible for leading initiatives for new discoveries in the field. This requires considerable investment, both financially and from participants and scientists, in order to succeed. While organizations like AFTD provide crucial support, the NIH is the biggest funder of FTD and dementia research in the U.S. By investing in projects like ALLFTD2, the NIH supports the development of diagnostic tools and treatments while helping to further our understanding of neurodegenerative disorders like FTD.

“NIH support for ALLFTD2 ensures that the FTD research field will continue to have access to a vital resource,” said AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD. “With the number of clinical trials for FTD increasing, and some even reaching completion, now more than ever, we need the support of ALLFTD2.”

There is Hope in Numbers
The natural history study began in 2019 through an NIH grant that merged two previous studies: Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS).

The ALLFTD research network of 28 clinical sites in North America has evaluated over 3000 participants, many of whom are actively involved in the research community. Participants in ALLFTD completed over 6,500 study visits, including many returning for follow-up visits. This study has provided valuable insight into disease monitoring for participants at risk for FTD or living with FTD. It also provides extensive data for researchers.

The reach of ALLFTD’s first iteration extended well beyond its direct outputs – by expanding research participant groups, sharing data with other researchers, and leading scientific analyses to better understand how the disease manifests and progresses to inform detection and treatment.

Thanks to incredible participation by many individuals, ALLFTD has also contributed to developing new tools, such as biomarker development, and the ALLFTD mobile app, which uses remote data collection to make participation more accessible.

ALLFTD2 will build upon similar goals to ALLFTD but will include thoughtful changes that will assist better clinical trial design.  We are excited to see the innovations that will arise from ALLFTD2.

Learn More About Research Participation
Natural history studies like ALLFTD2 or the European/Canadian GENFI are just one way that people living with FTD can participate in research; our website includes information about other options.

Are you interested in participating in studies for FTD? Sign up at the FTD Disorders Registry to learn of recruiting studies that match your interests. You may also be eligible for the online Registry Research Study to share insights about diagnosis, family history, lived experience, genetic testing, medical records, and more. Numbers have power. The more participants, the closer we come to a future free of FTD.