Frequently Asked Questions (FAQs)


What is the purpose of the Registry?

The SDS Registry is dedicated to accelerating research and treatment for SDS to improve survival for all patients with SDS.

Why should I join the Registry?

Top 10 reasons to join:

  1. Accelerate research and treatment for SDS
  2. It’s easy!
  3. Join from anywhere
  4. No extra needle pokes
  5. Confidential and private
  6. It’s not “just about hematology”
  7. Learn more about SDS
  8. SDSR provides a resource for all of your SDS questions
  9. There’s strength in numbers
  10. Help us find a cure for SDS!

Is there a cost to me to participate on the Registry?

There is no cost to you to participate.

What are the research priorities of the Registry?

Ongoing Registry research priorities include:

  1. Identification of new medicines for SDS
  2. Drug screens for effective and safe therapies
  3. Gene discovery and therapy
  4. Collaboration across institutions
  5. Identifying the complications of SDS and their treatments
  6. Curing SDS

Can I make a donation to the Registry to support its ongoing efforts?

Absolutely!  Continued funding support is critical for the continuation of the SDS Registry. Please visit our “How to Help” page to make your tax-deductible gift today.