While great ideas and new technologies support research advances, the ingredient that pulls everything together are the people who share a passion and a commitment to tackling the seemingly unsolvable problems like FTD. They have decided that the “status quo” is not the “status go”. At AFTD, we are committed to facilitating the exchange of ideas and promoting and funding FTD research. And bringing diverse stakeholders together for some creative conversations can lead to great things.
Miami Meetings: February 2010
The start of the NACC-FTLD
In February 2010, AFTD hosted two scientific meetings in Miami that laid the foundation for a national FTD patient registry and for collaboration between FTD researchers and pharmaceutical companies. AFTD co-hosted a workshop with the National Institute for Neurologic Diseases and Stroke (NINDS) and the National Institute on Aging (NIA) to create a national database for patients with FTD. The database enables collection of uniform data on FTD patients for the first time. Thirty leading FTD clinicians and researchers from across the U.S. and Canada convened to define the common data elements that comprise the FTD database. Today, the National Alzheimer’s Coordinating Centers- Frontotemporal Lobar Degeneration (NACC-FTLD) Module has approximately 500 case entries, 300 FTD and 200 controls, with clinics from across the country submitting data.
Meeting sponsors were represented by (from left) Creighton Phelps, Ph.D.,
director, Alzheimer Disease Centers, NIA; Philip Lovett, AFTD board member;
Helen-Ann Comstock, AFTD founder; and Walter Koroshetz, M.D., deputy director, NINDS.
The starting concept for the FTD Treatment Study Group (FTSG)
AFTD hosted an additional meeting in Miami that brought together a small group of FTD clinical experts and representatives from biotechnology and pharmaceutical companies to hear about two promising therapeutics that were in – or nearing – clinical trials in FTD patients. The meeting afforded participants a small, informal venue to discuss recent advances in FTD research and to identify both the difficulties that FTD presents for clinical trials and potential ways to surmount them. This workshop led to a series later in 2010 in Toronto and Indianapolis and as a result the FTSG was born – a collaborative forum for private and public sector stakeholders to advance drug discovery and therapeutics development for FTD. See our FTSG page for more information.
Representing UK-based TauRX Therapeutics were
Claude Wischik, Ph.D. (left) and Hans Moebius, M.D., Ph.D.