Donor-Patient Contacts

Anonymity Criteria for DKMS Donors and / or Patients of DKMS Registry

Donor and recipient information are confidential for at least two years post-donation (1 year for US donors). The goal of maintaining donor and recipient anonymity is to ensure privacy for both, donor and recipient. In some countries, no contact between donor and recipient is allowed. If regulations differ between donor and patient country, the stricter rule applies (e.g., if no contact between donor and patient is allowed in the donor or patient country, there will be no contact). If no laws of the donor or patient country conflict, the following applies:

• Anonymous correspondence between donor and recipient is allowed immediately after the transplantation.
• In case of DKMS donors, all correspondence is checked by DKMS employees to ensure confidentiality guidelines are met. The correspondence is documented in DKMS´ software.
• The exchange of photos showing people or recognizable locations / landscapes is generally not permitted. In particular, photos of donor, recipient or family members may not be exchanged.
• Post cards with clear indication of the donor’s or recipient’s residence are not allowed.
• Anonymous letters between relatives of deceased patients and their donors (or the patient and relatives of a deceased donor) are possible.
• One gift – meeting anonymity criteria – is allowed per side. The gift
  • should not be more expensive than 20 EUR / 20 USD.
  • should not contain anything fragile.
  • should not contain food items, including beverages or sweets.
  • should not contain audio files.
  • should not include gift certificates or money.
• In case of patients of DKMS Registry, messages from the patient can be handed to the transplant center to send it on to the registry of the donor directly without involvement of DKMS Registry.

Patient Follow-Up Information

Stem cell donation is an altruistic act. Most donors are interested to know if the donation was successful and the patient has recovered after stem cell donation. In addition, engraftment data have to be obtained for the collection centers to prove their quality and fulfill requirements for JACIE accreditation.

• DKMS requests patient follow-up information usually three months after stem cell donation including engraftment data. The engraftment data will be sent to the collection center for their quality management and JACIE accreditation.
• Donors will be informed about the outcome of the patient’s transplantation but only basic and anonymous information is given to the donor.
• Upon a donor’s request, DKMS asks for further updates after 1 year and / or annually.

Release of Personal Information between Donor and Recipient

If no laws of the donor or patient country conflict, two years after transplantation (for DKMS US donors 1 year), personal information of donor and recipient can be exchanged. If it is possible, the following applies:

• DKMS allows exchange of personal information between donor and recipient.
• The release of personal information between donor and relatives of their deceased recipient (or vice versa) is also possible. The anonymity period of 2 years is lifted once the patient is deceased.
• A subsequent donation or MNC Apheresis within the second year after transplant may prolong the confidentiality period. Another year of anonymity adds from the day of the second transplant date (for HSC donations) or three months from the day of infusion of the first portion of MNCs, respectively.
• Either recipient (via the transplant center) or donor has to request the release of personal information.
• Donor and recipient have to sign a consent form to release personal information.
• The recipient´s written consent to release personal information to the donor should be already on file when the request is sent to DKMS.
• Once DKMS has received the consent form from donor and recipient, the personal information can be exchanged.