Lowering barriers to genetic testing for FSHD
Currently, one of the eligibility criteria for volunteering in an FSHD clinical trial is positive confirmation of the disease by a clinically approved genetic test. Unfortunately, many patients and families who are trying to get tested have faced barriers, from doctors who don’t know how to order the test to insurance companies that balk at paying for it. The lack of accessible and affordable genetic testing is a disservice to patients as well as an obstacle to having a “trial-ready” community.
In response to this challenge, the FSHD Society, in collaboration with industry sponsors, established a clinically approved genetic testing program for the FSHD community in the US. Although the industry sponsored program concluded, the genetic testing program is still available through Genome Medical as a self-pay or insurance coverage option. The genetic counselors at Genome Medical will help you navigate insurance reimbursement coverage.
Our TestFSHD program includes certified genetic counseling and testing. Test results will become part of your medical record, which can help you to obtain services you need. In some instances, having the genetic diagnosis on your medical record could have an impact on the ability to obtain long-term disability insurance or life insurance. The genetic counselor can help you decide if genetic testing is right for you.
Free genetic testing is currently available as part of a research study through Peter Jones’ nonprofit organization, myfshd.org. For those who wonder if they may have FSHD, this can be a good option. However, it is not a clinically approved test and does not satisfy current eligibility criteria for clinical trials.
The FSHD Society has established a genetic testing program for facioscapulohumeral muscular dystrophy (FSHD) to help patients qualify for upcoming clinical trials. This program includes proper genetic counseling through Genome Medical’s accredited genetic counselors to fully explain the ramifications of the genetic testing and provides the necessary medical referral required for genetic testing.
The TestFSHD program is a part of our Therapeutic Accelerator initiative, aimed at removing barriers that to research and drug development success in FSHD.