Barth Syndrome Patient-Inputted Registry and Repository
Barth Syndrome Patient-Inputted Registry and Repository
Thanks to people like you, the experience of living with Barth Syndrome can be understood like never before. The more health information we collect through this patient registry, the closer we can get to helping our research community find treatments that work. Check out this video to learn more.
If you have been affected by Barth syndrome as a patient or caregiver, you eligible to join the Barth Syndrome Registry and Repository. Our goal is to collect your shared information in the registry in order to amplify the voices of those affected by Barth Syndrome. With your help, participation, and shared information, together we can help advance our mission of saving lives through education, advances in treatment, and finding a cure for Barth syndrome.
Protecting patient data, while providing diverse stakeholders with broad access to the aggregated information, is our top priority. This registry is managed by our partners at Invitae in a rigorous manner to allow compliance with HIPAA and FISMA data and patient protection laws.
If you have been affected by Barth syndrome as a patient or caregiver, you eligible to join the Barth Syndrome Registry and Repository. Our goal is to collect your shared information in the registry in order to amplify the voices of those affected by Barth Syndrome. With your help, participation, and shared information, together we can help advance our mission of saving lives through education, advances in treatment, and finding a cure for Barth syndrome.
Protecting patient data, while providing diverse stakeholders with broad access to the aggregated information, is our top priority. This registry is managed by our partners at Invitae in a rigorous manner to allow compliance with HIPAA and FISMA data and patient protection laws.
