Participating in the SDS Registry

It’s easy to join the Shwachman-Diamond Syndrome Registry

 

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Step 1: Contact the SDS Registry to discuss eligibility and provide informed consent
If you are interested in enrolling your child or yourself in the Shwachman-Diamond Syndrome Registry (SDSR), please contact us. Consent forms can be Emailed or mailed directly to you. We require consent forms to be reviewed over the phone with the SDSR research staff before signing them. You will need to contact the SDSR to set up a time to go over the forms. This telephone call is short and we can work around your busy schedule. If the patient is a minor (under age 18) parents/legal guardians must review and sign the consent forms. It is important that the signed consent form(s) be mailed back to the SDSR office as soon as possible. A pre-addressed, pre-stamped envelope will be provided to you.

Step 2: Important items we need from you to assist with the goals of the Registry:
Obtain medical records. We do the work for you!
A new Release of Medical Records form is required annually for you to share copies of your medical records with the SDSR. This form will be sent to you each year. The records requested by the SDSR include clinic notes, notes from hospitalizations, laboratory results, radiology studies, and pathology reports from your primary care physician and any specialists you see for your care. To protect the confidentiality of your medical records the SDSR study staff will assign a unique study code to each participant. This coded information will be entered into a secure computer database.

Step 3: Samples of your blood and bone marrow
The Registry would like samples of your blood and/or bone marrow when obtained as part of routine clinical care. No extra procedures are ever required. Please contact the SDSR regarding these samples 1 month prior to your scheduled clinic visit and we will send you all of the materials needed.

Step 4: Share updates about your health
After your consent is complete we will send you Patient Questionnaire to be about your past and current health. This questionnaire will be periodically sent to you so the Registry can track your health over time. We are happy to assist you by phone when you are filling out the questionnaire.

The Registry staff is always available to help you and make your participation as easy as possible.