Maintaining Donor & Patient Confidentiality

The National Marrow Donor Program (NMDP), which operates the Be The Match Registry^SM, protects the rights and privacy of people who receive transplants or donate bone marrow, blood cells or umbilical cord blood for transplants. In fact, by U.S. law and federal contract, we must have a system to keep patient and donor information confidential.

Confidentiality rules and standards

We have rules and standards for handling donor and patient information.

• All NMDP employees must sign an agreement stating they will not share any donor or patient information with anyone who is not authorized to see it.
• NMDP and Network employees must keep donor and patient data confidential at all times from donor sign-up through transplant.
• Patient and donor identities are kept confidential during the search, donation and transplant process and for at least 12 months after transplant:
  • The transplant center and patient do not know the donor's name. Patients are told only the donor’s age and gender.
  • The donor is told only the patient's age, gender and disease.
  • For the first year after transplant, the donor and patient may write letters anonymously through the NMDP, but cannot share their names or any other identifying information.
  • After one year, if the patient and donor both sign release forms, the NMDP tells them how to contact each other. Some centers have more restrictive rules, and others do not allow the patient and donor to have direct contact at any time. The identity of cord blood donors always remains confidential.
• The NMDP does not give donor or patient contact information to any other person or organization (such as the media) unless a release form is signed.
  
  

Secure data systems

We operate our own computer software and database system to track donor, patient and search data. Donor and patient contact information in the system is protected by strict access limits:

• We give each donor and patient an identification (ID) number that is used to track all data for that person. NMDP Network centers, labs and repositories use the ID number to transfer medical or tissue-typing data without linking it to a person's name or contact information.
• NMDP employees who need access to donor and patient contact information must log in to separate password-protected systems. We only give passwords to employees at the NMDP or Network centers who have proper approval to see or make authorized updates to patient or donor data.

We file paper forms that include donor and patient information in a locked area. Only employees who need to use the files have access to them.

ID numbers on blood or cell samples

When a donor joins the NMDP's Be The Match Registry, he or she gives a swab of cheek cells OR blood sample and is assigned a donor ID number. The blood or cell sample is labeled only with the donor ID number and is tested for the donor's tissue type. The only time the blood or cell sample and ID number are ever linked with a donor's name is when it is necessary to contact a donor to ask for more testing because he or she matches a patient.

All NMDP staff and subcontractors that provide services for the NMDP, such as storing blood and cell samples, are required by law and contract to keep donor-identifying information private.

Research standards

We conduct many research projects through our research affiliate, the Center for International Blood and Marrow Transplant Research^® (CIBMTR), to study bone marrow and blood cell transplants using unrelated donors and cord blood. Through our studies, we hope to: find ways to better match donors and patients, obtain donor feedback about the donation procedure and track transplant outcomes. CIBMTR’s scientific committee reviews and approves all research projects to ensure they are scientifically sound.

Any research project that involves our donors or patients  also is reviewed and approved by our Institutional Review Board (IRB) before the research begins. The IRB continues to oversee each project until it is complete. IRB members are doctors, ethicists and people of the community who have no stake in the research. The IRB exists to protect the rights of our donors and patients who participate in research.

Anyone who joins the Be The Match Registry or any patient who is searching our registry for a donor may be asked to participate in research. If a donor or patient is asked to participate in a research study, these steps always take place:

• The donor or patient is given details about the type of data asked for or sample needed and the purpose of the research.
• The donor or patient is included in the research only if he or she agrees and signs a consent form.
• All donor or patient information included in a research study is tracked by an ID number and is never linked to a name.
• Research results that are published or made public cannot contain any information that could identify a specific donor or patient.
  
  

Fundraising standards

The NMDP never sells or shares registry member or patient contact information with outside agencies.