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FAQs

  • What is the purpose of the registry?
    To accelerate research and treatment of Shwachman-Diamond Syndrome. Ultimately, registry participants are helping us get one step closer to finding a cure for SDS.
  • Does it cost money to join/participate in the registry?
    It does NOT cost anything to join or to participate in the registry. All of our research activities are covered by federal and institutional funding, and by our incredible donors. While it does not cost anything to enroll, we do appreciate donations of all sizes, so that we may continue our research into SDS.
  • What are the registry’s research-related priorities?
    Our priority is CURING SDS, We will do this through collaborations across institutions to: identify the complications of SDS and their treatments identify new medications to treat SDS drug screens for safe and effective therapies gene discovery and gene therapy acting as a resource for knowledge about SDS for patients, families and medical professionals bring together patients, families, clinicians and scientists to help improve quality of life and treatment for SDS Join our Facebook community!
  • Is it a lot of work to join the registry?
    It is very easy to join the registry. If you or your child has a diagnosis of SDS or an SDS-like syndrome, you can contact the registry at SDSregistry-dL@childrens.harvard.edu to set up a consent discussion over the phone or over Zoom. After the consent discussion, once the signed consent form is returned to our team, you/your child will officially be enrolled!
  • Can you only join if you live in certain countries/states? Do you have to be a patient at Boston Children’s Hospital (BCH) or Cincinnati Children’s Medical Center (CCHMC) to join?
    You can join from anywhere! Not only do we have patients from all over the U.S., but we also have patients from all over the world. You do not have to be a patient at BCH or CCHMC.
  • Will the registry keep my information confidential/private?
    Keeping our families’ information confidential is our #1 priority. We take patient privacy very seriously and are constantly monitoring the methods we use to keep your information safe and secure, both physically and electronically.
  • If I consent to research samples (e.g. a blood sample, marrow sample, etc.), would this require an extra needle poke?"
    No, there are no extra needle pokes involved. We collect the research sample at the same time as the clinical sample is being collected using an extra tube.
  • 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 make your tax-deductable gift today.
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