SENDING SAMPLES & RECORDS
Biological samples and information from medical records are absolutely essential to advance research on SDS. For SDS Registry participants, we ask you to let us know any time you or your child is scheduled for a bone marrow exam (aspirate/biopsy). Participants can share their medical records with the SDS Registry and provide a medical release form.
For more information about requesting a sample collection kit or sharing medical records with the registry, please visit the pages linked below.
The registry requests samples of your blood and/or bone marrow when obtained as part of routine clinical care.
No extra procedures/needle pokes are required.
Please contact the SDSR regarding these samples using the request form below prior to your scheduled clinic visit, and we will send you all the materials you will need.
Requesting a sample kit
Have a bone marrow procedure coming up at a site other than BCH or CCHMC? Request a kit from us! We ask patients or families to submit kit requests as far in advance of the procedure as possible (2-4 weeks); however, we can facilitate last-minute sample collections on a case-by-case basis.
To request your sample collection kit please email SDSRegistry-dL@childrens.harvard.edu the following information:
participant's first and last name, phone number, date of procedure, address for sending your kit, and any additional information you'd like to include.
To protect confidentiality, a unique study code is assigned to each participant. This coded de-identified information is entered into a secure database. Hospitals and insurance companies do NOT have access to the SDSR database.
How do I send medical records to the registry?
There are a few different ways that you can send records to the registry. Families and providers can send records via email, fax, or by mail:
Boston Children's Hospital
ATTN: SDS Registry
300 Longwood Avenue
Boston, MA 02115
If your institution uses Epic, you may be able to share your/your child's records via ShareEverywhere. If you would like to provide your records via ShareEverywhere, please email SDSRegistry-dL@childrens.harvard.edu so we may facilitate this with you.
To protect confidentiality, a unique study code is assigned to each participant. This coded de-identified information is entered into a secure protected database. Hospitals and insurance companies do NOT have access to the SDSR database.
MEDICAL RECORD RELEASE FORM
To share your/your child's records from a hospital or clinic, you will need to sign a medical release form. If you have not filled out a release in the last year, please download it and email it to: SDSRegistry-dL@childrens.harvard.edu.
*The release must have an ink signature.
Types of records to send to the registry
Types of records to send to the registry:
Bone marrow reports with:
Somatic mutation results
CBC (complete blood counts) from around the same time as the marrow exam
All CBCs and lab results
Clinic notes (including but not limited to hematology, gastroenterology, genetic counseling, oncology, neurology, ophthalmology, psychology, orthopedics, etc.)