Research Database for Hematopoietic Cell Transplantation and Cellular Therapies - Adult Unrelated Donor Research Consent Form

Sep 4, 2026

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Adult unrelated donor research consent form describing the purpose and use of a research database managed by CIBMTR for hematopoietic cell transplantation and cellular therapies. It explains what data are collected from donors during donation, how de-identified information may be shared with researchers and partner organizations, and how studies are reviewed and approved. It outlines potential risks, emphasizes confidentiality and limited access, and notes possible review of medical records by regulatory or oversight bodies, including summaries on ClinicalTrials.gov.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages6

Reading Time15 min

AccessFree to download

Invitation and Purpose

What to Expect

Possible Risks and Benefits

Confidentiality and Use of Information

Reimbursement and Cost

RESET PRINT Research Database for Hematopoietic Cell Transplantation and Cellular Therapies Adult Unrelated Donor Research Consent Form 1. Invitation and Purpose We invite you to take part in a Research Database. The Research Database is managed by the CIBMTR® . CIBMTR stands for Center for International Blood and Marrow Transplant Research. It is a research collaboration of NMDP® and the Medical College of Wisconsin. The CIBMTR does research with healthcare data from patients who have had a transplant or other cellular therapy and donors who donate bone marrow or peripheral blood stem cells (PBSCs) . We are trying to learn more about what makes transplants and other cellular therapies work better. If you join, your data may be included in a variety of studies about transplant and cellular therapies. These studies look at things like: • How well recipients recover from transplant or cellular therapy; • How to make the recovery better; • How a donor’s or recipient’s genetics affect recipient recovery; • How patients can get better access to transplant or cellular therapy; • How well donors recover from donating. 2. What to Expect When you donate, the doctor already sends data to us, including: • Your blood and tissue type • Your age, gender and race • Results of testing your blood (for example, diseases, number of cells) • Symptoms you have after donating If you agree to take part in the Research Database, these data that have already been collected will be used in research studies. Your transplant-related or cellular therapyrelated data may be shared with: • Researchers, • Partner organizations, or • Other registries outside the CIBMTR. The data that is shared will not include any information that could identify you. All research studies must be approved by us before using the data. The studies will also be reviewed to make sure the research matches the types of studies in section 1 above. 3. Possible Risks and Benefits There are no physical risks to you if you agree to take part in the study. There is a small risk that an unauthorized person could find out which data are yours. Your donor center and the CIBMTR have procedures in place to keep your data private. No identifiable information about you will be given to the researchers, nor will it be published or presented at scientific meetings. You will not benefit by taking part in the Research Database. You will not directly receive any results generated from this research. However, this research may help future patients who need a transplant or cellular therapy. 4. Confidentiality and Use of Information Your privacy is important to us. We will make every effort to protect it. Your donor center and the CIBMTR will not intentionally tell anyone that you are taking part in the Research Database. Your donor center and the CIBMTR have procedures in place so that no one outside the CIBMTR will know which data are yours. The NMDP/CIBMTR, the Food and Drug Administration (FDA), or other US government agencies may ask your donor center if they can look in your medical record. These data reviews are done from time to time to make sure that the data in the Research Database are correct. When you agree to take part in the Research Database, you agree to these reviews, which may include copying parts of your medical record. A description of this clinical study is available on [http://www.ClinicalTrials.gov](http://www.ClinicalTrials.gov) , Identifier NCT01166009, as required [by U.S. law. This website will](by U.S. law. This website will) not include information that can identify you. At most, the website will include a summary of the results. You can search this website at any time. You will not receive any results generated from this research. This research is covered by a Certificate of Confidentiality from the National Institutes of Health. Researchers can protect your information if there is a court case. However, some of y

FAQs

What is the purpose of the Research Database for adult unrelated donors?

The database aims to learn what makes transplants and other cellular therapies work better. Participation allows data to be included in multiple research studies about recovery, genetics, access, and donor recovery.

What data may be used in research if I agree to participate?

Your doctor already submits donor data such as blood and tissue type, demographic details, blood test results, and symptoms after donating. These data are used in approved research studies.

Are my data shared with others, and can I be identified?

Shared data will not include information that could identify you. Research studies are reviewed before data use, and the system limits disclosure while allowing combined, non-identifying analysis.

Sep 4, 2026

Upload by Aria