Stimulating Research

Miami Meetings: February 2010

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.

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.

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.

Representing UK-based TauRX Therapeutics were
Claude Wischik, Ph.D. (left)
and Hans Moebius, M.D., Ph.D.

Strategic Research Analysis: 1998 – 2008

AFTD partnered with the Alzheimer’s Drug Discovery foundation (ADDF) to fund a comprehensive survey of all research funded over the past decade that relates to FTD.  The analysis surveyed a wide range of international research and publication databases and funding agencies to gather as comprehensive a picture as possible.  Key findings from the Analysis include:

•  FTD overall received little funding over the past decade compared to Alzheimer’s disease (10% of AD)

•  The majority (83%) of all FTD funding originated at the NIH. However, contribution from the NIH has steadily decreased over time (5-fold 1999 – 2007)

•  A near absence of FTD-specific patient, palliative, end of life care management or best care practice research was observed

This Analysis provides the first comprehensive view of all work being conducted in FTD research internationally, and we anticipate that this report will guide our research investments and advocacy efforts to garner more funding for FTD research over the next few years. Follow this link to download a copy of this  Strategic Analysis.

Miami Meeting: January 2007

Early in 2007 AFTD partnered with two NIH Institutes (the National Institute of Neurologic Diseases and Stroke and the National Institute on Aging) to host a meeting of leaders in the field of FTD. Thirty-three leaders from 17 institutions in five countries met to assess the current state of FTD research and treatment.   The purpose of the workshop was three-fold: to review the current state of knowledge about FTD; to create a prioritized list of recommendations to move the field forward; and to emerge with an overall blueprint to speed translation of FTD research into the clinic and into development of potential new therapeutics.

The outcome of the conference was a report that summarized the status of FTD research and treatment at the time and presented a prioritized list of recommendations and specific steps to implement those recommendations. This document is still in use as a “road map” for FTD research, and specific results have included a pathology workshop hosted by NINDS in February 2008 and the Drug Discovery partnership between AFTD and the Alzheimer’s Drug Discovery Foundation.