1 ‘Part of the healing:’ Mom tracks impact of organs donated from 6-day-old son Originally published April 5, 2015 at 4:35 pm 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.

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

NDRI’s History and Overview 5

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

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

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

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

58,000 Tissue Offered Nationally NDRI 24 / 7 29,000 Tissues Placed 4,600 Diseased Tissues / 82 Diseases 400 Researchers Served Key Metrics 10

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

2014 Publications – Number of publications per Research Area

Scientific Services NDRI’s 13

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

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.

Project Examples NDRI’s 16

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

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

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. Renal Research

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

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

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

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. 23

General Overview 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 Current Projects 24

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

Thank you! 8 Penn Center, 15 th Floor 1628 JFK Boulevard Philadelphia, PA Researchers: fax 26