NAF is excited to announce that we are beginning a feasibility study of a program to remove barriers to genetic counseling and testing. Eligible participants will receive genetic counseling at no-cost to them. After counseling, if the participant and genetic counselor determine that testing is the right decision, genetic testing will be offered at no-cost to the participant.
Who is eligible?
At this time, the pilot program is being offered to those who are at-risk for SCA3 because they have a family member with a confirmed genetic diagnosis of SCA3. Participants must be a member of NAF, live in the United States, and be 18 years of age or older.
Not a member yet?
Sign up for free membership: www.ataxia.org/JoinNAF
How do I sign up for the Genetic Counseling and Testing Initiative?
Initial participants have already been selected. We reached out to a random group of NAF members who identified SCA3 as their type of Ataxia and chose “Person with Ataxia” or “Person at Risk for Ataxia” as their membership type. Those individuals will have the opportunity to participate in the feasibility testing phase of the initiative. We plan to expand the program to more participants if the pilot is successful. Sign up to be contacted when enrollment is opened to more participants and more types of Ataxia: www.ataxia.org/GeneticTestingInterest.
Pass this information along to family members who might also be interested.
Why is NAF offering this?
A diagnosis confirmed with genetic testing can be helpful to a person who is at-risk for a rare inherited disease. The confirmation of a clinical diagnosis takes away uncertainty and becomes a tool for a patient and their doctor. It helps identify clinical trials and therapies that may be a fit for the patient. However, some individuals might not have access to genetic counseling and testing. NAF would like to remove those barriers for individuals who want access to genetic counseling.
Why aren't other types of Ataxia eligible for this initiative?
Focusing on one type of Ataxia at the launch of the program allows NAF to develop a system that is simple and seamless for the participant, their physician and the genetic counselors who have been contracted for this program. NAF had to develop limited eligibility criteria for the pilot program to meet the immediate needs of NAF’s pharmaceutical partners and stay within a set budget for the feasibility testing phase. Drug companies that are working on therapy development for SCA3 approached NAF with their desire to identify qualified participants for upcoming clinical trials that are in the pipeline. There is an urgent need to empower SCA3 patients with the ability to choose if a clinical trial or research study is appropriate for them. A genetic diagnosis is oftentimes a requirement to participate in a clinical trial. That is why SCA3 was chosen as the Ataxia type for the pilot program.
We are happy to offer this service to our Ataxia community and hope to be able to expand eligibility for the initiative in the future. We will keep you updated on the progress of the pilot program.
