Update: AllStripes, formerly RDMD, is enrolling patients with inclusion body myositis (IBM). As of March 2021, we have met the minimum required to move forward with research! If you are interested, see the details below:
Watch the RDMD recording of the live video session we did in early 2019 to learn more about the RDMD Inclusion Body Myositis (IBM) Program details, how to join, and what you can expect. MSU was the first myositis nonprofit patient advocacy group to collaborate with RDMD realizing its potential.
RDMD helps rare disease patients retrieve, access, and accelerate research with their medical records. They work with your hospitals so you can be in control of your medical records data. If you choose to participate in research, de-identified information from your records can be shared with researchers to advance the understanding of your condition. And, you are in control of the sharing of these records at all times through informed consent and opting in-or-out of sharing.
Information from medical records is not currently being collected systematically. This information is trapped at hospitals across the country and only patients have the power to release them and contribute them to help further research.