Cardiac Channelopathy Novel Gene Discovery Program
In accordance with our IRB-approved protocol 1216-97, we are accepting samples from patients with:
1. A strong clinical phenotype c/w either LQTS, CPVT, IVF, or BrS
2. A negative commercial genetic test for that suspected disease
If you are a patient/family satisfying these enrollment criteria, contact the study coordinator below and she will then work with you and your doctor, gather the necessary clinical data to support the assignment as Phenotype Positive, send DNA collection kits, and consent from you for participation in this research study.
As a novel gene discovery program, there is no timeframe or guarantee of finding your disease-causing gene/mutation. However, if a novel disease gene/mutation was discovered in a particular research subject, that finding would be first disclosed to the research subject and then to the referring physician with permission. In addition, that referring physician would be included in the discovery publication.
I look forward to partnering with each of you in our effort to explain the rest of the channelopathies.
Take care and thank you,
Michael J. Ackerman, MD, PhD
Study Coordinator - Carla Haglund-Turnquist
507-284-8900 – firstname.lastname@example.org