It’s easy to join the Diamond-Blackfan Anemia Registry!
Contact the DBA Registry to discuss eligibility and provide informed consent
If you are interested in enrolling yourself and/or your child into the Diamond-Blackfan Anemia Registry, please contact us. We can email or mail the consent form directly to you or you can download the consent form from registration materials. The DBA research team can go over the consent form with you over the phone before signing at a time convenient for you. Patients under the age of 18 will require parent or legal guardian to review and sign the consent form. The signed consent form can be mailed back to the DBAR research office in a pre-stamped/pre-addressed envelope that will be provided to you.
Important items we need from you to assist with the goals of the Registry
After the consent is complete, we will ask that you fill out a questionnaire regarding your past health history and current health. We can mail a questionnaire to you which you can complete to the best of your ability and return to in a pre-stamped/pre-addressed envelope. You can download a printable form or fill out the document and scan the completed form back to the DBAR research team either via email or fax. You may also request a survey link from the DBAR research team to fill out the questionnaire online. We can provide assistance when completing the questionnaire.
Medical Record Release form
In addition, we ask that you fill out a medical record release form. The records requested by the DBAR 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 DBAR research team will assign a unique study code to each participant. This coded information will be entered into a secure computer database.