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research

Tools for Researchers

Tools for Researchers

A collection of resources and tools to aid you in your basic or clinical research efforts.

Databases and Repositories

Rare Diseases Human Biospecimens/Biorepositories (RD-HuB)

A searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.

Human Genetic Cell Repository

Answers questions about these research resources.

National Disease Research Interchange (NDRI), National Rare Disease Biospecimen Resource (NRDBR)

Provides researchers with organs, tissues, blood, and DNA or cell lines donated from people with rare diseases; works with patient advocacy groups; and provides a link between patient advocacy groups, patients with rare diseases, and researchers of those disorders.

Orphanet

European database dedicated to information on rare diseases and orphan drugs; it aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.

HCUP Main Page

The Healthcare Cost and Utilization Project (HCUP, pronounced "H-Cup") is a family of health care databases and related software tools and products developed through a Federal-State-Industry partnership and sponsored by the Agency for Healthcare Research and Quality (AHRQ). HCUP databases bring together the data collection efforts of State data organizations, hospital associations, private data organizations, and the Federal government to create a national information resource of patient-level health care data (HCUP Partners). HCUP includes the largest collection of longitudinal hospital care data in the United States, with all-payer, encounter-level information beginning in 1988. These databases enable research on a broad range of health policy issues, including cost and quality of health services, medical practice patterns, access to health care programs, and outcomes of treatments at the national, State, and local market levels.

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Medical Devices

FDA Office of Orphan Products Development (OOPD)

The FDA Office of Orphan Products Development (OOPD) mission is to advance the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. In fulfilling that task, OOPD evaluates scientific and clinical data submissions from sponsors to identify and designate products as promising for rare disease and to further advance scientific development of such promising medical products. The office also works on rare disease issues with the medical and research communities, professional organizations, academia, governmental agencies, industry, and rare disease patient groups.

FDA Center for Devices and Radiological Health (CDRH)/Humanitarian Use Devices

Information about Food and Drug Administration (FDA) regulation of medical devices and radiologic health and devices that benefit patients with a rare disease that affects fewer than 4,000 individuals in the United States per year.

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Genomics

CDC Genomics and Health Weekly Update

Information about the impact of human genetic research on disease prevention and public health.

Centers for Disease Control and Prevention's National Office of Public Health Genomics

Provides updated information on how human genomic discoveries can be used to improve health and prevent disease and provides links to CDC- wide activities in public health genomics.

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From NIH Institutes

National Cancer Institute (NCI) Research Resources

A directory of research tools and resources for cancer research.

National Eye Institute (NEI) Resources

Includes databases, statistics, ophthalmic collections, and opportunities in research.

National Heart, Lung, and Blood Institute (NHLBI) Online Resources for Researchers

Databases, biologic resources, clinical and population studies, new study design resources, and training opportunities.

National Human Genome Research Institute’s (NHGRI) Online Research Resources

Research resources developed at and outside of the NHGRI relating to all aspects of the human and animal genome programs.

National Institute of Allergy and Infectious Diseases (NIAID) Resources for Researchers

Information on the divisions, interdivision programs, microbiology, infectious diseases, and NIAID Pathogen Genomics Resources for Researchers.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): Health Topics

Genetic databases, bioinformatic tools, flow cytometric resources, microarray Web resources, and research guidelines.

National Institute of Biomedical Imaging and Bioengineering (NIBIB) Biotechnology Resource Centers

Information about Biomedical Technology Resource (P41) Centers and how biomedical investigators who have NIH-supported projects can gain access to the newest and most advanced technologies, techniques, and methodologies.

National Institute of Dental and Craniofacial Research (NIDCR) Research Resources

Information about the Dental, Oral, and Craniofacial Data Resource Center for oral health surveys and the Head and Neck Tissue Array (HNTA) International Initiative.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Resources for Researchers

Information on how resources can be made available to researchers including reagents, biological samples, specialized animal phenotyping cores, and bioinformatics.

National Institute of Environmental Health Sciences (NIEHS) Research Resources

Information about the NIEHS Division of Intramural Research Core Facilities and services.

National Institute of General Medical Sciences (NIGMS) Genetic and Genomic Resources

Answers questions about these research resources.

National Institute of Neurological Disorders and Stroke (NINDS) Resources for Scientists

Information about animal models, research reagents, clinical and translational resources, gene expression, cell/tissue, and DNA.

National Institute on Alcohol Abuse and Alcoholism (NIAAA) Research Information

Database resources, graphics gallery, research guidelines, resources, and related Web sites.

National Institute on Deafness and Other Communication Disorders (NIDCD) Resources for Scientists

Information about NEIBank ear libraries, model organisms, stem cells, and the trans-NIH Mouse Initiative.

NICHD Resources for Researchers

Links to bioengineering, human tissue repositories, disease models, neuroscience research resources, and other resources for research.

NIH Office of Technology Transfer - Neglected Diseases

A searchable database of technologies available for licensing from NIH and U.S. universities.

NIH Office of Technology Transfer - Rare Diseases

Technologies related to rare diseases or conditions available for commercial licensing are listed under the related disease or condition.

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Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.