Genetics is making a difference in research and the knowledge gained about frontotemporal degeneration (FTD). A selection of resources on this topic is provided below:
association for Frontotemporal Degeneration
The Association for Frontotemporal Degeneration (AFTD) is an advocacy organization with a mission to improve the lives of people affected by FTD. Here are some resources from the AFTD:
- A page explaining the “Genetics of FTD”
- A booklet for “Understanding the Genetics of FTD: A Guide for Patients and Their Families” that can be downloaded
- A webinar on “FTD and Genetic Testing — A Practical Approach”
- A video on Navigating the Uncertainty of Familial FTD that addresses the risks of inheriting FTD, the factors for deciding whether to undergo genetic counseling and testing, and the emotions of an FTD diagnosis.
Sponsored Genetic Testing Programs
Sponsored genetic testing programs fill a gap between what insurance companies cover and what needs to be known for diagnostic purposes and for possible consideration in clinical trials. Learn more from these resources:
- An article about Sponsored Genetic Testing Programs for FTD
- Information about programs that currently exist for FTD:
- A chart to view the currently available testing programs
FTD DISORDERS REGISTRY
The FTD Disorders Registry has the following resources:
- The Importance of Genetic Testing & Counseling in FTD
- Genetic Counseling & Testing During the Coronavirus Pandemic 2020
- Sponsored Genetic Testing Programs for FTD
- Progranulin Clinical Trials 2022
Handouts created in collaboration with Penn FTD Center:
- Understanding the Genetics of FTD
- Who Should Consider Genetic Testing for FTD, and Why?
- Understanding Genetic Testing
- Understanding Genetic Counseling
Studies that are currently recruiting that focus on finding or knowing your genetic status:
- Genes, Brains, and Decisions
- Genetics of FTD in Diverse Populations (English)
- La genética de FTD en poblaciones diversas (Spanish):
- INFRONT-3: Evaluating AL001 in FTD
- Neurofilament Surveillance Project (NSP)
- PROCLAIM: PROO6 in FTD with progranulin mutations (FTD-GRN)
- Progranulin Gene FTD (PG FTD) Genetic Counseling and Testing
- upliFT-D: PBFT02 in Patients with FTD and Progranulin Mutations (FTD-GRN)
HOW TO FIND A SPECIALIST
- The American College of Medical Genetics and Genomics has a Genetics Clinics Database for locating a genetics center in the United States.
- The National Society of Genetic Counselors (NSGC) offers information about who genetic counselors are and tool to find a certified genetic counselor to meet with in person or via telehealth.
** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.