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‘Part of the healing:’ Mom tracks impact of organs donated from 6-day-old son

‘Part of the healing:’ Mom tracks impact of organs donated from 6-day-old son. Within hours of Thomas’ death, his eyes and liver were recovered and sent — along with umbilical cord blood from him and his brother — to researchers. But that wasn’t the end for his mother.

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‘Part of the healing:’ Mom tracks impact of organs donated from 6-day-old son

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  1. ‘Part of the healing:’ Mom tracks impact of organs donated from 6-day-old son Within hours of Thomas’ death, his eyes and liver were recovered and sent — along with umbilical cord blood from him and his brother — to researchers. But that wasn’t the end for his mother. Originally published April 5, 2015 at 4:35 pm

  2. “The way I see it,” Sarah Gray said, “our son got into Harvard, Duke and UPenn. He has a job. He is relevant to the world. I only hope my life can be as relevant.”

  3. “The Match.com of science.” The National Disease Research Interchange (NDRI) connects hospitals that supply organs and tissue with researchers who request it.

  4. National Disease Research Interchange Advancing Medical Research through Organ and Tissue Donation Thomas Bell, MS, PhD Director of Scientific Service

  5. History and Overview NDRI’s

  6. Mission Statement To advance disease research through the procurement, preservation and distribution of human cells, tissues and organs. To provide researchers on the cutting edge of disease research with the biomedical resources that are essential for their work.

  7. Who We Are What you should know about NDRI A 501c3 corporation Governed by a board of directors NIH funded Support for over 30 years by the National Institutes of Health NDRI was founded in Philadelphia in 1980 7,000 biospecimens Provided to biomedical scientists per year Publishing ~150 scientific publications annually

  8. Biospecimen Donor Profiles Deceased Donors LivingDonors Pre-registered Research Donors Organ / Tissue/ Eye

  9. Nationwide Procurement Network 56 23 46 Organ Procurement Organizations Tissue Banks Satellite Sites Hospitals Eye Banks Recovery Personnel 18 37 200

  10. Key Metrics

  11. Researcher Study Diversity Dorsal Root Ganglia Blood Immunology Respiratory Rare Disease Musculoskeletal Digestive Ocular Reproductive Renal Cancer Cardio-vascular Neuroscience Endocrine Medical Devices Cell Biology

  12. 2014 Publications – Number of publications per Research Area

  13. Scientific Services NDRI’s

  14. The Development of a Research Protocol: Biospecimen Application Process 1. Application 2. Feasibility Review • Tissue needs / donor profile • IRB documentation of approval • Project synopsis • CV / biosketch 3. Customized Protocol Development

  15. Standard Authorization / Consent • Consent from patient/family includes Research, Education and Training • Consent allows for access to medical record in order to assure eligibility • Consent allows for not-for-profit as well as for-profit (if applicable) • No payment made to donor or family • IF SPECIAL CONSIDERATIONS: for example, creation of cell lines, or other special circumstances – re-approach to family would need to be made.

  16. Project Examples NDRI’s

  17. Hepatic Research Hepatitis C studies both the affect of the disease and treatment with new medicines.

  18. HIV + Projects Following donation, both the family and the care provider will be informed about the research supported by their gift.

  19. Renal Research • Studies done on the kidneys so that all the kidneys that are transplanted will not be rejected. • Studies done on the cause and treatment of Bladder cancer .

  20. RARE DISEASE Projects – ALS, CF, MARFANS, Restless Leg Syndrome, Sickle Cell Anemia.

  21. Pancreatic Research • Islet cell isolations • In the hopes of someday just using some cells to replace the function of the pancreas – “curing” diabetes.

  22. Research on nerve roots to better understand and treat neuropathy and chronic pain. Research on Cancer tumors to create new drug treatments.

  23. NDRI is uniquely positioned to recover a wide variety of high quality tissues and cells from both normal donors and those with common or rare diseases. These tissues are used for studying diseases and treatments targeted at those diseases.

  24. General Overview Current Projects • Study of cells and how they work • Basic Science, Cardiovascular, Digestive, Endocrine • Immune, Musculoskeletal, Neuroscience • Respiratory, Renal, Unrinary • Study of diseases and the affect/impact of disease • Common and Rare Disease • Tissue Injury, Regeneration and Repair • Tissue Engineering and Implant Development

  25. Summary 24/7 access to donor centers Project-driven services to scientists Service Collection centers across the United States National Why Use NDRI? Worldwide distribution capabilities Global Diseased and normal biospecimens available from multiple donor types Diverse Donor Service SOPs in place for consent, recovery and distribution Ethical

  26. Thank you! 8 Penn Center, 15th Floor1628 JFK BoulevardPhiladelphia, PA 19103 215.557.7361 215.557.7154 fax Researchers: research@ndriresource.org tbell@ndriresourece.org www.ndriresource.org

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