Trans-NIH Research: Scientific Collaboration for the 21st Century

Educational Campaigns and Clearinghouses

Children and Clinical Studies Educational Web Resource

Children and Clinical Studies is a web-based educational tool designed to equip parents and children with the information they need to understand clinical research and make informed decisions about participating in a pediatric study. The site combines text, graphics, and documentary films of experts, parents, and children sharing their experiences with pediatric clinical research.

NIH Participants: NHLBI, NICHD, and NCRR

ClinicalTrials.gov (Registry of Clinical Research)

ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. ClinicalTrials.gov currently contains close to 60,000 trials sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in 157 countries.

The U.S. National Institutes of Health (NIH), through its National Library of Medicine (NLM), has developed this site in collaboration with the Food and Drug Administration (FDA), as a result of the FDA Modernization Act to provide a public resource of information on clinical research.

NIH Participants: NLM, NCI, NEI, NHLBI, NHGRI, NIA, NIAAA, NIAID, NIAMS, NICHD, NIDCD, NIDCR, NIDDK, NIDA, NIEHS, NIGMS, NIMH, NINDS, NINR, CC, and NCCAM

Evolution in Medicine Curriculum Supplement Committee

This is a trans-NIH effort to develop a one-week long curriculum supplement for high school biology classes studying evolution. The goal is to provide students with examples of how evolution impacts modern biomedicine.

NIH Participants: OSP/OSE, NCI, NEI, NHLBI, NIA, NIAID, NIDA, NIDCR, NIGMS, NINDS, and NCRR

Genetics and Rare Disease Information Center

The Genetic and Rare Diseases Information Center (GARD) provides accurate, reliable and current information on genetic and rare diseases to patients and families, health care professionals and biomedical researchers. GARD was established by the National Human Genome Research Institute (NHGRI) and the NIH Office of Rare Diseases (ORD) in the Office of Disease Prevention (ODP).

NIH Participants: NHGRI and ODP/ORD

HBO Addiction Project

The National Institute on Drug Abuse (NIDA) and the National Institute on Alcohol Abuse and Alcoholism (NIAAA) partnered with Home Box Office (HBO) and the Robert Wood Johnson Foundation on a groundbreaking documentary called Addiction. The feature-length film is part of a multimedia public health campaign that also includes a web site, book, and community outreach activities. The goal of this project, launched in March 2007, is to help Americans understand addiction as a chronic yet treatable brain disease, spotlighting promising scientific advancements. The project received the 2007 Governor’s Award from the Academy of Television Arts and Sciences (an Emmy award).

NIH Participants: NIDA and NIAAA

Human Genetic Variation Supplement Project

The Human Genetic Variation Supplement Project is an inquiry-based instruction program, designed to promote active learning and stimulate student interest in medical topics. The Project has developed a curriculum supplement that provides five basic activities that focus on the basics of human genetics, its potential to improve human health and its application towards understanding human evolution. More than 25,000 copies of the curriculum supplement have been distributed to high school teachers. The supplement was developed by the NIH Office of Science Education (OSE) in the NIH Office of Science Policy (OSP) with the support of the National Human Genome Research Institute (NHGRI).

NIH Participants: NHGRI and OSP/OSE

Introduction to the Principles and Practice of Clinical Research

This is a study curriculum on how to effectively conduct clinical research. Most medical schools lack a formal course in training for clinical research, and investigators have relied on mentors to learn how to conduct clinical trials. This activity was established at the NIH Clinical Center. The program trains researchers in how to design a successful clinical trial by focusing on epidemiologic methods, study design, protocol preparation, patient monitoring, quality assurance, and FDA issues. Other areas covered include data management and ethical issues, including protection of human subjects.

NIH Participants: CC, NCI, NEI, NIA, NIMH, NIAID, and NCCAM

MedlinePlus and MedlinePlus en español

Health information portals help bring together NIH information and other government and authoritative health information for patients, families and professionals. MedlinePlus links to over 4,500 consumer health web documents in English, and over 651 in Spanish, from across NIH.

NIH Participants: NLM, NCI, NEI, NHLBI, NHGRI, NIA, NIAAA, NIAID, NIAMS, NIBIB, NICHD, NIDCD, NIDCR, NIDDK, NIDA, NIEHS, NIGMS, NIMH, NINDS, NINR, CC, NCCAM, NCMHD, and OCPL

National Asthma Education and Prevention Program

The National Asthma Education and Prevention Program (NAEPP) was initiated in March 1989 to address the growing problem of asthma in the United States. The NAEPP works with intermediaries including major medical associations, voluntary health organizations, and community programs to educate patients, health professionals, and the public. The NAEPP seeks to enhance the quality of life for patients with asthma and decrease asthma-related morbidity and mortality by improving asthma awareness, diagnosis, and treatment. The National Heart, Lung, and Blood Institute (NHLBI) leads the NAEPP.

NIH Participants: NHLBI, NIAID, and NIEHS

National Diabetes Education Program

The National Diabetes Education Program is coordinated by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Centers for Disease Control and Prevention (CDC) and includes over 200 partners at the federal, state, and local levels, working together to reduce the morbidity and mortality associated with diabetes.

NIH Participants: NIDDK, NEI, and NIA

National Eye Health Education Program Partnership

The National Eye Health Education Program Partnership was established by the National Eye Institute (NEI) to promote collaboration on eye health education for higher risk audiences including people with diabetes, people over age 60, and people with a family history of eye disease.

NIH Participants: NEI, NIDDK, and NIA

NIH Celiac Disease Awareness Campaign

The NIH Celiac Disease Awareness Campaign provides current, comprehensive, science-based information about the symptoms, diagnosis, and treatment of celiac disease, also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is an immune reaction to gluten, a protein found in wheat, rye, and barley. An estimated 1 percent of all Americans suffer from celiac disease, though many have never been diagnosed and are not receiving treatment. The National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) coordinate this campaign.

NIH Participants: NIAMS and NIDDK

NIH Osteoporosis and Related Bone Diseases – National Resource Center

The NIH Osteoporosis and Related Bone Diseases – National Resource Center provides patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases. The mission of NIH ORBD-NRC is to expand awareness and enhance knowledge and understanding of the prevention, early detection, and treatment of these diseases as well as strategies for coping with them. The NIH Osteoporosis and Related Bone Diseases – National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS).

NIH Participants: NIAMS, NIA, NICHD, NIDCR, NIDDK, and ORWH

NIHSeniorHealth.gov

The National Institute on Aging (NIA) and the National Library of Medicine (NLM) collaborate on the conceptualization, design, and expansion of this senior-friendly website. NIHSeniorHealth features health information on a variety of topics pertinent to older adults with additional topics are being added on an ongoing basis.

NIH Participants: NIA, NLM, NCI, NEI, NHLBI, NIAMS, NIAID, NIDA, NIDCD, NIDCR, NIDDK, NIGMS, NIMH, NINDS, and NCCAM

Trans-NIH Communications Group on Common Diseases

This group aims to develop and implement a cohesive communications plan to inform and educate both the public and health professionals about the genetics of common disease and traits. The group’s plan includes developing web-based information regarding how to understand the implications of data generated by genome-wide association studies, how to interpret such data, and how to use it in personalized health care. As a first step, the group collected empirical data regarding the views of consumers and health professionals and conducted a scientific literature review and a environmental scan.

NIH Participants: NHGRI, NCI, NHLBI, NIAID, NIDA, NIDCR, NIDDK, NIEHS, NIMH, NINDS, NLM, OCPL, OIR, and OSP; other participating agencies include CDC and HHS

Trans-NIH Working Group on Genetics for the Public

The mission of this working group is to foster trans-NIH discussions of strategies to improve genetics education for the public, including information about genetic and genomic research. In 2007, the Group developed a pamphlet and 2 page fact sheet on “Genetic Testing: What it Means for You and Your Family,” available from the National Human Genome Research Institute (NHGRI).

NIH Participants: NHGRI, ODP/ORD, NLM, NICHD, NCI, OCPL, NIAMS, and NINR

Undiagnosed Diseases Program

An inter-institute initiative, this program is sponsored by the NIH Office of Rare Diseases (ODP/ORD), the National Human Genome Research Institute (NHGRI), and the NIH Clinical Center. The goals of the program are to provide answers to patients with mysterious conditions that have long eluded diagnosis, and to advance medical knowledge about rare and common diseases.

NIH Participants: All NIH Institutes, Centers, and Offices

Usher Syndrome

Usher syndrome is the most common condition that affects both hearing and vision. This website includes basic facts and resources for patients and families, information about clinical trials, and funding information for scientists. The National Eye Institute (NEI) and the National Institute of Deafness and Other Communicative Disorders (NIDCD) provide the content for this website.

NIH Participants: NEI and NIDCD

We Can! “Ways to Enhance Children’s Activity and Nutrition”

We Can! is a national program designed for families and communities to help children maintain a healthy weight. This program is coordinated by the National Heart, Lung, and Blood Institute (NHLBI).

NIH Participants: NHLBI, NCI, NIDDK, and NICHD

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