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Resources - Organ and Tissue Donation
Organ and Tissue Donation for Research
The National Resource Center (NDRI) Private Donor Program provides an opportunity for patients and their families to make a directed donation of discarded surgical tissue or organs and/or tissue obtained post-mortem for use in medical research. The donor can designate that any organs or tissue can be recovered for research or limit the donation to a specific tissue and/or research into a specific disease. The private donor process is shown in Figure 1 and described below. Patients and families become aware of the Private Donor Program through communications from patient advocacy groups, referrals from organ or tissue recovery organizations, health care providers, or internet searches. The patient or family either self-refers or agrees for a third-party to release their contact information to NDRI. The NDRI Private Donor Coordinator, a nurse with advanced credentials in organ procurement and transplantation, contacts the potential donor to explain the program and determine their wishes. The Coordinator collects basic clinical information, determines the timing of the donation and secures a witnessed, informed consent.
Depending on the nature of the donation, NDRI will coordinate tissue recovery with the patient's surgeon or hospital pathology department, or pre-arrange post-mortem organ or tissue recovery at a location proximal to the patient. In the latter case, NDRI utilizes its national network of trained recovery technicians to identify staff that can be available 24/7 for tissue recovery. In collaboration with the family and funeral home, NDRI arranges for the transportation of the donor to a site properly equipped for organ or tissue recovery and provides the recovery team with appropriate preservation, packaging and shipping supplies in advance of the recovery.
Parallel with the donation process, NDRI research coordinators engage in a process of identifying researchers with an interest in the donor's specific disease or determine which tissues will be accepted into the NDRI tissue repository. Individual researchers are contacted and a customized recovery protocol is developed.
At the time of donation, an NDRI coordinator will manage the recovery logistics and arrange for the shipment of the samples to various researchers. Contact is maintained with the donor family throughout the donation and final arrangements are made with the funeral home to accept the remains at the end of the procedure.
Following organ or tissue recovery, NDRI acquires and collates additional clinical information from the patient's primary physician or specialist for release in an anonymous or de-identified format to the researchers. Follow-up is provided to the donor family immediately following the procedure and after researcher feedback is obtained. Both the recovery team and funeral home are reimbursed for any costs incurred in effecting the research recovery.
The costs associated with procurement through the Private Donor Program can be very significant, but none are passed on to the donor or donor’s family. This program is a vital component of NDRI's tissue procurement program, forming a central part of the interaction with patient advocacy groups, and providing important tissues that would not be available through NDRI’s other established sources.
- Facts about Organ and Tissue Donation for Research
- Consent for Donation of Anatomical Gifts - Living Donor
- Consent for Donation of Anatomical Gifts
- Donor Information Questionnaire for Donation to Medical Research
Page last updated 8/30/04 back to top