Organs for Research
Many people are familiar with signing the back of their driver’s license to provide consent for organ and tissue donation for transplant; but few people consider the opportunity to donate organs and tissues to medical research. The need for organs and tissues to be donated for medical research becomes even more important when people are suffering from a rare disease, because too often so few, if any, answers are available.
The ARPKD/CHF Alliance has partnered with the National Disease Research Interchange (NDRI) to provide you with the opportunity to donate tissues, and have those tissues distributed to scientists who are trying to understand better and development treatments for ARPKD/CHF. NDRI works together with many different rare disease patient advocacy groups, to help inform their patient members of the opportunity to donate and help make a difference, providing hope to others, and potentially helping to find a new treatment, or cure. ARPKD/CHF patients can donate multiple different tissue types that could potentially make the difference in research. NDRI coordinators are able to discuss with you the two donation opportunities offered, either from a surgical procedure, or post mortem (after death), and will help you make the right donation decision for you and your family.
All tissue donations are coordinated by NDRI staff, from completing the consent form to ensuring your donated tissue safely arrives at the researcher’s laboratory. The tissue you donate will be de-identified before being distributed to researchers, and will be assigned a unique identification number, that only NDRI employees can link to your personal information. Your personal information will be maintained in a secure, password protected database, only accessible by NDRI employees. The information that will be shared with researchers receiving your donated tissue sample will be de-identified of any personal information, and will only include such information, but not limited to, your age, race, sex, medical and social history, and sometimes clinical information directly associated with the tissue sample you donated.
Unfortunately, because of the manner in which donated tissue samples are distributed to, sometimes, multiple research projects, no information about any of the results from your donated sample will be shared with you.
To learn more about registering with NDRI as an organ and tissue donor for ARPKD/CHF research, or to learn more about other donation for research options, please contact an NDRI coordinator today, by calling 1-800-222-NDRI (6374).
An NDRI Coordinator is available to speak with you 24 hours per day.