AFTD/ALS Association Digital Assessment Tools for FTD and ALS

Funding is available to researchers around the world for the development beyond the discovery stage towards validation of digital tools that can be used across the FTD-ALS spectrum.

The Association for Frontotemporal Degeneration (AFTD) is a US-based 501(c)(3) non-profit organisation founded as the Association for Frontotemporal Dementias in 2002. Its mission is to promote and fund research into finding causes of, and cures for, the frontotemporal dementias; to provide information, education and support to those affected and those who care for them; and educating physicians and allied health professionals about frontotemporal dementias (FTDs).

The ALS Association is an American non-profit organisation founded in 1985. Its mission is to lead the fight to treat and cure amyotrophic lateral sclerosis (ALS)/motor neurone disease (MND) through global research and nationwide advocacy, while also empowering ALS patients and their families to live fuller lives by providing them with compassionate care and support.

As FTD and ALS are considered interconnected diseases, with diagnosis based on a spectrum, research is needed to focus on tools that can be applied to both conditions. For this reason, ALS association and the AFTD are providing funding for the development of digital assessment tools that are applicable to both ALS and FTD. The call is seeking projects that will refine, adapt, evaluate or validate digital tools that have already undergone preliminary testing in humans with a focus on aligning approaches across ALS and FTD.

Two types of application will be considered:

• Advancing tool development: Example topics include, but are not limited to:
  • Adaptation or testing of a digital assessment developed for ALS in an FTD cohort or vice versa.
  • Further development, verification or analytical validation of a digital assessment tool already tested in ALS and FTD cohorts.
  • Head-to-head comparison of digital assessment tools developed for ALS or FTD across both disorders.
  • Evaluation or development of a digital tool from a related disease space in both ALS and FTD cohorts.
  • Harmonisation of digital assessment tool data across ALS and FTD clinical cohorts to enable maturation of tools applicable to the populations and clinical settings of both disorders.
• Creating a clinical model as a guide for digital outcome assessment development: The conceptual model should be inclusive of ALS and FTD (eg for the prodromal C90rf72 mutation or FTD-ALS).