Why should I join the SDSR?

Accelerate research and treatment for SDS

  • The things we learn about SDS through the Registry allow us to determine what causes SDS and find ways to treat it.

It’s easy!

  • Participation takes little of your time. The Registry does most of the work for you.

Join from anywhere

  • The Registry can receive your consent over the phone if you are unable to visit a Registry site in either Cincinnati or Boston.

No extra needle pokes

  • With your permission, small amounts of blood or marrow are shared with the Registry and drawn ONLY with scheduled blood or marrow testing.

Confidential and private

  • Information about your health is protected and will not be shared outside of the Registry (i.e. hospitals, insurance companies, etc.).

It’s not “just about hematology”

  • The Registry is collecting information about all aspects of SDS including pancreatic/nutritional, liver and neuropsychological issues.

Learn more about SDS

  • The Registry is a resource for both patients and physicians regarding SDS. Contact us with any questions.

SDSR provides a resource for all of your SDS questions

  • The Registry staff is available to speak to families and physicians regarding SDS.

There’s strength in numbers

  • SDS is a rare disease. The more people who participate in the Registry, the more we can learn about SDS, improve medical management, develop new treatments and advocate for SDS families.

Help us find a cure for SDS!

Currently, there’s little information about SDS and the Registry would like to continue to change that. The diagnosis of SDS is easily missed and the disease may not be as rare as we think. There’s a lack of recognition of the dire complications that can accompany SDS. There’s truly strength in numbers and the more participants on the Registry, the higher the likelihood we can move forward towards finding a cure.