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Resource Sharing
NIH spearheads the sharing of resources across the research enterprise to advance science in ways that were not previously possible.
Genomic Data Sharing
Data and resources shared by NIH significantly bolstered the research community’s ability to investigate the effects of gene behavior on complex diseases. This widespread sharing of information led to new insights into type 1 diabetes, coronary artery disease, bipolar disorder, and schizophrenia, among others.
Image credit: Janusz Dutkowski and Trey Ideker, University of California, San Diego
- Variations in genes can affect the way that genes behave in health and disease.
- In 2014, NIH released the Genomic Data Sharing Policy, which set forth expectations and facilitated the sharing of genomic research data broadly and responsibly.
- The NIH Common Fund Genotype-Tissue Expression Project created a catalog of genetic variants that includes over 17,000 RNA-sequencing samples from 948 donors, and a related online resource stores and shares data that has been used to support over 7,000 publications.
Instrument Sharing
NIH accelerates scientific discovery through supporting the purchase of state-of-the-art commercially available instruments that are too expensive to be acquired by an individual researcher. These instruments are used on a shared basis across institutions, enabling them to be used by multiple researchers and projects.
Image credit: Rhoda Baer, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH
- Shared resources are cost-efficient and beneficial to thousands of researchers in hundreds of institutions nationwide.
- Since 2012, NIH funded the purchase of over 1,100 scientific instruments, which advanced and enabled new NIH-funded research.
- Over 11,000 research publications have cited the use of NIH-supported instruments. Through this program, biomedical researchers gained access to modern scientific instruments that they would not otherwise have been able to use due to the exceedingly high cost of purchasing advanced scientific equipment.
Behavioral Science
NIH-funded research improved our understanding of human behavior and transformed how human behavioral research is conducted. For example, NIH supports a collection of more than 100 behavioral science measures, targets, and experimental outcomes in a publicly accessible repository.
Image credit: Ernesto del Aguila III, National Human Genome Research Institute, NIH
- The NIH Common Fund Science of Behavior Change Program demonstrated how interventions focused on behavioral change, such as adherence to medical regimens, can influence health behaviors and be measured across the whole person at the psychological, behavioral, social, and biological levels.
- Human behavioral interventions are relevant to many disease conditions, such as disrupted sleep, type 2 diabetes, and chronic pain.
Stem Cells
NIH-supported science enabled the first U.S. clinical trial of patient-derived stem cell therapy to treat age-related macular degeneration. By developing scientific resources that could be shared with the broader scientific community, NIH accelerated the development of stem cell-based therapies that are potential tools for regenerative medicine.
Image credit: National Eye Institute, NIH
- The clinical trial used a type of patient-derived stem cell called induced pluripotent stem cells (iPSCs), which are adult cells reprogrammed to behave like embryonic stem cells—a type of stem cell that can become any cell in the body.
- NIH developed and made available several iPSC cell lines for research and clinical use.
- Other research groups are now using this protocol to develop therapeutics and working to overcome technical hurdles that will enable these cells to be used beyond research, such as in regular clinical practice.
Cancer Statistics
NIH and CDC fund the nation’s premiere resource for cancer statistics, the Surveillance, Epidemiology, and End Results (SEER) program. SEER collects data from multiple cancer registries—covering ~48% of the U.S. population—which can support an enormous variety of research studies and be used to inform nonprofit, state, and federal reports and policy changes.
Image credit: Ernesto del Aguila III, National Human Genome Research Institute, NIH
- SEER data are used to measure progress against cancer and identify challenges that need to be addressed.
- SEER has also been linked to the Medicare database, creating a valuable source of detailed information on Medicare recipients with cancer.
- SEER data have been used as the primary dataset in >17,000 publications and have been referenced in >86,000 publications.
Genomic Data
The NIH-funded Genomic Data Commons (GDC) enables researchers to share data in a way that allows the data to be reused and compared across different projects. This fosters a culture of collaboration and makes it much easier for researchers to access high-quality datasets for their research.
Image credit: Ernesto del Aguila III, National Human Genome Research Institute, NIH
- The GDC contains data from multiple cancer genomic datasets, including the Cancer Genome Atlas (TGCA) and the Therapeutically Applicable Research to Generate Effective Therapies (TARGET) database.
- The GDC currently contains 2.9 petabytes (1 petabyte = 500 billion pages of standard printed text!) of primary sequencing data from over 60 projects. Since its inception in 2016, the GDC has been cited in over 400 publications.
ClinicalTrials.Gov
Since 2000, the NIH-supported website, ClinicalTrials.gov, has provided easy access to information about nearly 400,000 publicly and privately supported clinical studies on a range of diseases and conditions in all 50 states and 220 countries. This resource is available to patients, their family members, health care professionals, and researchers.
Image credit: National Eye Institute, NIH
- NIH worked with FDA to develop the ClinicalTrials.gov website, which launched in 2000.
- Anyone can use ClinicalTrials.gov to find a study for themselves or someone else, see results of completed studies, and learn how clinical research works. Researchers can also use the site to share up-to-date information about their clinical research.
- ClinicalTrials.gov has information on nearly 400,000 registered studies, and in the past 12 months, the site has had 51 million unique visitors and 252 million page views.
PubMed
Available online since 1996, PubMed is a free NIH-supported resource that facilitates the search and retrieval of biomedical and life sciences literature. The PubMed database contains more than 33 million citations and abstracts.
Image credit: Darryl Leja, NHGRI
- PubMed is the most frequently used scientific and medical literature database in the world.
- PubMed has more than 2.5 billion daily searches by researchers, medical practitioners, and the public.
References
Genomic Data Sharing
- NIH Genomic Data Sharing Policy: https://sharing.nih.gov/genomic-data-sharing-policy
- Database of Genotypes and Phenotypes: https://www.ncbi.nlm.nih.gov/gap/
- Genotype-Tissue Expression Program: https://commonfund.nih.gov/Gtex
- GTEx Portal: https://gtexportal.org/home/
- Genotype – Tissue Expression (GTEx) Project: https://www.genome.gov/Funded-Programs-Projects/Genotype-Tissue-Expression-Project
- Gamazon ER, et al. Nat Genet. 2015;47(9):1091-8. PMID: 26258848.
- Fromer M, et al. Nat Neurosci. 2016;19(11):1442-1453. PMID: 27668389.
- Article: Gene Duplication: New Analysis Shows How Extra Copies Split the Work: https://directorsblog.nih.gov/2016/05/31/gene-duplication-new-analysis-shows-how-extra-copies-split-the-work/
Instrument Sharing
- S10 Instrumentation Search Results in RePORTER: https://reporter.nih.gov/search/xI5Pmyns9UCZNT4kOtydkw/projects?shared=true
- NIH S10 Instrumentation Programs: Awards: https://orip.nih.gov/construction-and-instruments/s10-instrumentation-programs/filterable-awards-table
Behavioral Science
- Science of Behavior Change: https://commonfund.nih.gov/behaviorchange
- Science of Behavior Change Related Activities: https://commonfund.nih.gov/behaviorchange/related
- The Measures of the Science of Behavior Change: https://measures.scienceofbehaviorchange.org/
- NIH Science of Behavior Change: https://www.nia.nih.gov/research/dbsr/science-behavior-change-sobc
- Science of Behavior Change Program Highlights: https://commonfund.nih.gov/behaviorchange/programhighlights
- Special issue of Health Psychology: The Science of Behavior Change: Implementing the Experimental Medicine Approach: https://psycnet.apa.org/PsycARTICLES/journal/hea/39/9
Stem Cells
- Regenerative Medicine Program: https://commonfund.nih.gov/stemcells
- Sharma R, et al. Sci Transl Med. 2019;11(475):eaat5580. PMID: 30651323.
- Article: NIH launches first U.S. clinical trial of patient-derived stem cell therapy to replace dying cells in retina: https://www.nih.gov/news-events/news-releases/nih-launches-first-us-clinical-trial-patient-derived-stem-cell-therapy-replace-dying-cells-retina
- Article: NIH researchers rescue photoreceptors, prevent blindness in animal models of retinal degeneration: https://www.nih.gov/news-events/news-releases/nih-researchers-rescue-photoreceptors-prevent-blindness-animal-models-retinal-degeneration
- Stem Cell Translation Laboratory: https://ncats.nih.gov/stemcell
- AMD Integrative Biology Initiative: https://www.nei.nih.gov/about/goals-and-accomplishments/nei-research-initiatives/regenerative-medicine/amd-integrative-biology-initiative
Cancer Statistics
- Surveillance, Epidemiology and End Results (SEER) Program Metrics: https://seer.cancer.gov/about/factsheets/metrics.pdf
Genomic Data
- Heath AP, et al. Nat Genet. 2021;53(3):257-262. PMID: 33619384.
- Grossman RL, et al. N Engl J Med. 2016;375(12):1109-12. PMID: 27653561.
ClinicalTrials.Gov
- ClinicalTrials.gov: https://clinicaltrials.gov/
PubMed
- PubMed Database: https://pubmed.ncbi.nlm.nih.gov/
This page last reviewed on March 1, 2023