History

Founded in 1980 by Lee Ducat, the National Disease Research Interchange (NDRI) is a 501(c)(3) not-for-profit organization that provides human biospecimens to scientists in academic, corporate and independent research organizations throughout the world.

We serve as a Human Tissue and Organ for Research Resource (HTORR). The National Institutes of Health (NIH) has supported our work for more than 35 consecutive years. Our unparalleled tissue recovery network includes some 130 partners comprised of organ procurement organizations, eye banks, tissue banks and hospitals, and our biorepository facility is accredited by the College of American Pathologists (CAP). Utilizing the expertise of NDRI staff and that of our recovery partners, we provide anatomical structures, organs, and tissues with annotated data to support research across the full spectrum of disease and disability.

Since our founding, we have been committed to expanding the horizons of medical knowledge. We continue to do so today, with an array of programs designed to provide human tissues and organs to meet critical research needs. We are grateful for the support we receive from the National Institutes of Health and other public and private funding sources, from our expansive nationwide network of recovery partners, and through the generosity of patients and families who want to contribute to finding answers to today’s most pressing biomedical challenges.

 

Timeline of key milestones in NDRI’s history:

1980
1980

National Diabetes Research Interchange

With a grant from the Pew Memorial Trust, Lee Ducat launches the National Diabetes Research Interchange prototype as a program of the Juvenile Diabetes Research Foundation International to provide human pancreas tissue for research.

1981
1981

First Tissue Retrieval

NDRI retrieves its first human tissue — a placenta and umbilical cord from a diabetic mother — and delivers the tissue to scientists at the Connective Tissue Research Institute at the University of Pennsylvania.

1984
1984

NDRI Receives First Grant

NDRI receives its first grant award from the National Institute of Arthritis, Diabetes and Digestive and Kidney Diseases to serve as a research resource to the National Institutes of Health, and also opens two satellite centers to aid pancreatic islet cell research.

1985
1985

Islet Cell Transplantation Trials

NDRI provides human pancreas tissues for clinical trials on islet cell transplantation at Washington University in St. Louis.

1986
1986

NDRI Expands Mission

The National Diabetes Research Interchange becomes the National Disease Research Interchange, serving over 80 different diseases and putting the skills, expertise and unique business systems it had developed to work for the broader biomedical research community.

1987
1987

Human Tissue Collection Center

The National Cancer Institute support establishes a Human Tissue Collection Center at NDRI, and NDRI receives its first Human Tissues and Organs for Research Resources (HTORR) grant from the National Institutes of Health, which continues to support us today.

1988
1988

Human Biological Data Interchange

NDRI launches the Human Biological Data Interchange (HBDI) with a grant from the Pennsylvania Department of Health and begins to recruit “special case families” for research into the etiology and pathogenesis of diabetes and other diseases.

1995
1995

NDRI Corporate Partners Program

NDRI launches the Corporate Partners Program, which provides highly customized biospecimen procurement services to pharmaceutical and biotechnology partners.

1996
1996

First International Partnership

NDRI launches its first international corporate partnership with HAB Research Organization in Japan.

2004
2004

Cystic Fibrosis Funding

NDRI receives funding to support the Cystic Fibrosis (CF) Foundation’s effort to provide a reliable source of explanted CF lungs for research and drug development, ultimately leading to development of Vertex Pharmaceuticals’ FDA-approved Kalydeco®.

2005
2005

25th Anniversary Celebration

NDRI marks its 25th anniversary with a celebration honoring Paul Lacy, MD, PhD, founding chairman of NDRI from Washington University.

2006
2006

National Rare Disease Partnership

NDRI launches the National Rare Disease Partnership, partnering with 25 voluntary health organizations to create donor and investigator registries to procure and provide biospecimens for research on rare diseases.

2007
2007

The LAM Foundation Partnership

NDRI begins tissue collection for The LAM Foundation, a patient advocacy organization that supports lymphangiolemyomatosis a rare lung disease.

2008
2008

NIH Funding Supplement

NDRI receives a funding supplement to its Human Tissues and Organs for Research Resource Grant from the National Institutes of Health’s Office of Rare Disease Research.

2010
2010

Genotype Research Pilot

NDRI receives funding to serve as the tissue procurement partner for the pilot National Institutes of Health Common Fund’s Genotype-Tissue Expression (GTEx) Project.

2012
2012

Leinweber Named President & CEO

In September 2012, the NDRI Board of Directors appointed William (Bill) Leinweber as President and CEO. Leinweber is a recognized leader in advocacy for medical and health research and critical public health issues.

2013
2013

ALS Collaborations

NDRI begins to collaborate with the Veterans Administration Biorepository Brain Bank and the Agency for Toxic Substance and Disease Registry/McKing Consulting Corporation to recover specimens from donors with amyotrophic lateral sclerosis (ALS).

2014
2014

TBI and Tumor Partnerships

NDRI partners with the Henry Jackson Foundation for the Advancement of Military Science to provide biospecimens for research on traumatic brain injury in veterans and with the Children’s Tumor Foundation for post-mortem tissue recovery services from registered donors for research on neurofibromatosis.

2015
2015

“Donation to Discovery” Symposium

NDRI celebrates 35 years with a scientific symposium, “From Donation to Discovery: The Critical Role of Human Tissue in Research” and presents the inaugural D. Walter Cohen, DDS, Service to Science Award to Dr. Cohen, a chair emeritus of the NDRI Board of Directors.

2016
2016

CAP Accreditation

NDRI undergoes the College of American Pathologists’ Biorepository Accreditation process and receives a three-year accreditation — testament that we manage biospecimens to the highest scientific standards.

2016
2016

Service to Science Award to Dr. Bennet Omalu

Featuring the real-life doctor portrayed by Will Smith in the 2015 film Concussion, who took on the NFL with his discovery of Chronic Traumatic Encephalopathy (CTE) and its effect on professional athletes. Dr. Omalu was awarded with NDRI’s D. Walter Cohen, DDS Service to Science Award for his advocacy on the importance of access to quality human biospecimens to advance scientific research on CTE, brain injury and other neurological diseases.

2017
2017

NDRI partners with the Bay Area Lyme Foundation and its Lyme Disease BioBank to build a system for collecting and banking a diverse group of biospecimens for use by the Lyme disease research community.

2018
2018

Service to Science Award to Dr. Collins, Director, National Institutes of Health

NDRI was thrilled to honor Dr. Francis Collins, Director, National Institutes of Health (NIH) with the D. Walter Cohen Service to Science Award in 2018. Dr. Francis Collins, a physician-geneticist, is noted for landmark discoveries of disease causing mutations for cystic fibrosis, and his leadership role in the 2003 completion of a finished sequence of the human DNA instruction book. In his role as Director of the NIH, Dr. Collins oversees the work of the largest supporter of biomedical research in the world, spanning the spectrum from basic to clinical research.

2018
2018

HTORR Grant Renewal as well as HIV, Autism, and Alzheimer’s Supplements

In August 2018, the NIH awarded NDRI with a five-year $6.5 million grant for the recovery of human tissues and organs for research. The HTORR award was followed by an additional $800,000, a series of supplemental grants providing support for NDRI to serve as a human biospecimen resource for research focused specifically on Alzheimer’s disease, Autism Spectrum Disorder (ASD) and HIV/AIDS.

2020
2020

NDRI Celebrates 40 Years of Empowering Research and Discovery

NDRI celebrated its 40th anniversary of continuously serving the scientific community since 1980. From it’s beginnings with a focus on diabetes research, NDRI has grown and adapted to serving all researchers by providing human biospecimens worldwide to advance biomedical/bioscience research & development.
2021
2021

NDRI Launches $12 Million Developmental Genotype-Tissue Expression Project

NDRI along with partners at Children’s Hospital of Philadelphia (CHOP), the University of Maryland’s Medicine Department of Pediatrics, and Johns Hopkins All Children’s Hospital received a research grant of $12.5M over five years to collaborate on the developmental Genotype‐Tissue Expression (dGTEx) project. The dGTEx project will establish the first comprehensive public resource correlating gene expression and genetic variation in pediatric tissues from all major organ systems in the human body.

2022
2022

Service to Science Awards

NDRI announced the awardees at our Service to Science event held at The Union League in Philadelphia. Dr. Katalin Karikó and Dr. Drew Weissman, the scientists who led the research and technology development for the therapeutic use of mRNA, received NDRI’s 2022 Empowering Research and Discovery Award. This award honors individuals whose contributions and leadership have helped advance critically needed research. Dr. Karikó and Dr. Weissman were awarded the Nobel Prize for Physiology and Medicine in 2023 for the same research.

2023
2023

SMaHT Initiative Launches

NDRI, in collaboration with the University of Maryland School of Medicine and Johns Hopkins All Children’s Hospital, are awarded a research grant of $14.4M over five years to collaborate on the Somatic Mosaicism across Human Tissues (SMaHT) Network. The initiative will provide the first comprehensive public resource for analyzing genetic variation due to somatic mosaicism in human tissues from all developmental layers in the human body.