Thanks to people like you, the experience of living with genetic conditions can be understood like never before. The more health information we collect through patient surveys and uploaded medical reports, the closer we can get to helping communities find treatments that work.
If you have been affected by myotonic dystrophy as a patient or caregiver you can join the Myotonic Family Registry.
Our goal is to use the basic data collected here in the registry to amplify the voice of those affected by myotonic dystrophy, no matter where they are in the world. Our mission is to give you a sense of inclusion in the myotonic dystrophy research community and to show researchers that there is a motivated and engaged community of affected individuals that are committed to participating in research in myotonic dystrophy and related conditions.
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.
We believe that research advances can be made made faster when data collection is standardized and patients participate.
The American College of Medical Genetics (ACMG) recently stated that the sharing of de-identified genetic data is "crucial" to the advancement of personalized medicine. The ACMG joins the American Medical Association (AMA), the National Society of Genetic Counselors (NSGC), and other professional societies in making this strong practice recommendation.
If you have been affected by myotonic dystrophy as a patient or caregiver you can join the Myotonic Family Registry.
Our goal is to use the basic data collected here in the registry to amplify the voice of those affected by myotonic dystrophy, no matter where they are in the world. Our mission is to give you a sense of inclusion in the myotonic dystrophy research community and to show researchers that there is a motivated and engaged community of affected individuals that are committed to participating in research in myotonic dystrophy and related conditions.
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.
We believe that research advances can be made made faster when data collection is standardized and patients participate.
The American College of Medical Genetics (ACMG) recently stated that the sharing of de-identified genetic data is "crucial" to the advancement of personalized medicine. The ACMG joins the American Medical Association (AMA), the National Society of Genetic Counselors (NSGC), and other professional societies in making this strong practice recommendation.
