Accessing MD STARnet Data

MD Starnet

As the only multi-site, population-based surveillance network for muscular dystrophy in the United States, MD STARnet is a unique source of data that can answer important questions.

To promote research in this field, MD STARnet has established the following process to give outside investigators access to the data for research purposes.

The MD STARnet Data Sharing Committee

MD STARnet has a Data Sharing Committee that reviews all proposed analyses, data requests, and scientific products. This Committee includes representatives from all MD STARnet sites and CDC. Members of this Committee include experienced epidemiologists, analysts, and clinicians.

To start the data request process:

  1. Please complete a data request form pdf icon[PDF – 132 KB]. Email the completed request form to
  2. Your request will be screened and you will be contacted with information on the next steps. Depending on the nature of your request, your request may go through review by the Data Sharing Committee on the monthly conference call.
  3. If your request is approved by the Data Sharing Committee, you may be asked to sign a Data Use Agreement and the MD STARnet Data Sharing Guidelines will be shared with you. You may also be required to collaborate with an existing MD STARnet site and/or CDC.

For more information, please email