AFTD Research Analysis
AFTD 2-Question Impact Survey
In the summer of 2014 we posted the following request on our AFTD webpage:
AFTD 2-Question Impact Survey – We need your help!
If you are a person diagnosed with FTD, or a primary caregiver/former caregiver/family member of someone with FTD, please answer this short on-line survey (2-questions) that will help AFTD advocate with public policy and healthcare providers.
The primary objective of this survey was to learn more about the impact of FTD symptoms on daily activities of life for persons diagnosed as well as for their caregivers or family members. We also wanted to learn more about how the disease has impacted the quality of life in general for individuals and/or family members. We sought to create a 2-question survey that allowed for multiple selections but at the same time was easy and quick to complete. We did not ask responders to prioritize their selections. We did not ask for self-identified persons-diagnosed to provide any further details regarding their diagnosis. Participation was voluntary and anonymous.
Our plan was to summarize the responses and use this information to help us in our advocacy efforts. One such effort is lobbying the Food and Drug Administration (FDA) to select frontotemporal degeneration as one of the diseases that will be the focus of public meetings in 2016/17 as part of the Prescription Drug User Fee Act (PDUFA), and FDA’s effort to inform their reviewers about the impact of underserved diseases on persons diagnosed and their families.
Click here to read the results.
FTD Research and Drug Development Landscape: April 2014
The five years following 2008, FTD clinical and basic science research began to grow as new researchers were drawn to the field, expanded and improved diagnostic criteria were developed, and technology advances contributed to our understanding of the genetics and neurobiology of FTD. It was clear the FTD landscape was changing rapidly and that drug development and clinical trials were becoming a reality. A new research review was initiated to define existing research gaps, identify opportunities for development and guide the next phase of strategic planning. Key findings from the Research and Drug Development review include:
- Unmet clinical need – there are no FTD-specific disease modifying or symptomatic treatments available
- Obtaining an accurate diagnosis is still a challenge, there is on average a delay of more than 3 years from onset of symptoms to a clinical diagnosis of FTD
- Common data repositories and biobanks such as the NACC-FTLD and the FTD Stem Cell Consortium are valuable as shared resources supporting FTD research
- Early drug discovery initiatives and clinical trials are currently driven by non-profit organizations, academic centers and the biotechnology industry
- Biomarkers are needed for diagnosis as well as to facilitate drug development and clinical trials
- Rapid advances in our understanding of the biology of FTD, genetics and the potential of induced pluripotent stem cells (iPSCs) is attracting the pharmaceutical industry to the FTD drug development sector
The Research and Drug Development Landscape is our first comprehensive view of the current state and activity in FTD research, how FTD fits into the larger world view of Alzheimer’s Disease and related dementias, the growth in opportunity for drug development in the FTD sector, as well as FTD gene mutations and neurobiology acting as a driving force in neurological diseases research. Follow this link to download a copy of our FTD Landscape.
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 decade 1998-2008 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 in that ten year period compared to Alzheimer’s disease (10% of AD)
• The majority (83%) of all FTD funding originated at the NIH. However, contribution from the NIH 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 provided the first comprehensive view of all work conducted in FTD research internationally. The data collected in this report was helpful in guiding our research investments and advocacy efforts to garner more funding for FTD research. Follow this link to download a copy of our first strategic research analysis.