Tissue donation is one of the most valuable and generous means to advancing research.
Many patients and their families contact FSR to express interest in organ and tissue donation to support sarcoidosis research. Tissue donation can provide patients with a way to help diminish the impact of diseases like sarcoidosis. The following information is provided as a resource to patients and professionals seeking information on organ and tissue donations. Please contact the organizations listed below for more information on specific policies and any application process.
National Disease Research Interchange
In 2006, FSR formed an alliance with the National Disease Research Interchange (NDRI) to help accelerate the collection of human tissues for placement with disease researchers. Funded primarily by the National Institutes of Health (NIH), NDRI, is a non-profit organization dedicated to the collection and preservation of human cells, tissues and organs and distribution of these tissues to researchers. NDRI hopes to bridge the gap between individuals willing to donate and the researchers in need of this precious gift.
With additional support from the Office of Rare Diseases at NIH and organizations like FSR, NDRI strives to provide researchers with the organs and tissues needed to develop new treatments and cures for a variety of diseases, including sarcoidosis. In addition to tissue, NDRI also collects blood from all rare disease donors for DNA samples and to generate cell lines, which are also made available to approved investigators. Human organs and tissues from NDRI are currently being used in research focused on possible causes for sarcoidosis as well as granuloma (masses of inflamed tissue) formation and diseased lung cells.
- For Patients
Patients interested in making a tissue donation for research, are asked to complete a medical questionnaire which asks about current medical conditions. This would include significant treatments, surgeries and medications. Research donations can include both diseased surgical discards and post-mortem tissue donation and does not compromise your ability to also be a transplant donor. NDRI works closely with procurement organizations to ensure that all organs needed for transplantation are retrieved first, and then non-transplanted donated tissues are utilized for research. To receive more information on tissue donation, please contact a Rare Disease Coordinator at raredisease@ndriresource.org, or by phone at 800-222-6374. For further information about NDRI, visit www.ndriresource.org.
- For Researchers
NDRI has a strict approval process for requests for human cells, tissues, and organs for research. After receiving a completed application, all projects are reviewed and NDRI’s Feasibility Review Committee, a panel of eminent scientists, determines the feasibility of each application. After review, NDRI works one-on-one with investigators to provide tissues and preservation procedures to fulfill their specific research needs. Complete the Researcher Application available through NDRI’s Web site at www.ndriresource.org or email a Rare Disease Coordinator at raredisease@ndriresource.org.
Donations to Hospitals/Universities
Patients can also contact their nearest university hospital or academic health center to inquire about tissue and organ donation. In some cases this will be the anatomy department.