Thank you for using the WS Registry.

As of 6/10/20, the Registry is undergoing upgrades. It is therefore temporarily closed to families.

However, the Registry team is working hard to support your recruitment efforts.

We hope the process for informing eligible subjects about your study is straightforward, However, do not hesitate to provide feedback or ask us any questions.

Please start by providing basic contact information for the principal investigator and primary study contact (if applicable).
Information about Requests
Requests enable you to utilize Registry Functionality, such as inquiring about Registry data or having the Registry announce your study to families. Requests do not need to be completed in one sitting.
Please read Detailed Information for Researchers before getting started.
Questions: For questions, call 617-643-3190 or email
Informational Links for Researchers:
Many researchers have the same questions about The Registry. Click here to view researcher FAQs.
Registry Data Snapshots
Click here to view Snapshots of Registry Data.
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