Trans-NIH Collaborations

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Educational Campaigns and Clearinghouses

AIDSinfo
This effort offers the latest U.S. Federal Government-approved information about HIV/AIDS medical practice guidelines and clinical trial research in treatment and prevention for health care providers, researchers, individuals affected by HIV/AIDS, and the general public. The website was developed to expand the visibility of timely and relevant federal HIV policies, programs, and resources to the American public; increase the use of new media tools by government, minority, and other community partners to extend the reach of HIV programs to communities at greatest risk; and improve knowledge about HIV and access to HIV services for people most at-risk for, or living with HIV. The medical practice guidelines are developed by working groups under the auspices of the Office of AIDS Research Advisory Council. These working groups include pharmacists, physicians, researchers, and HIV treatment advocates from across the country. InfoSIDA, a Spanish-language version, features a customized home page and Spanish language services.

NIH Participants: NLM, NIAID, OAR

Website: http://aidsinfo.nih.gov, http://infosida.nih.gov

Cancer Treatment and Oral Health
More than one-third of people treated for cancer develop complications that affect the mouth. These problems may interfere with cancer treatment and diminish the patient's quality of life. "Oral Health, Cancer Care, and You" informs patients and health care providers about steps they can take before, during and after cancer treatment to reduce the risk and impact of these often painful side effects. Materials for oncologists, dentists, and patients are included.

NIH Participants: NIDCR, NCI, NINR

Website: http://www.nidcr.nih.gov/OralHealth/Topics/CancerTreatment/

Children and Clinical Studies Educational Web Resource
This resource 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, DPCPSI

Website: http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php

ClinicalTrials.gov (Registry of Clinical Research)
This is a publicly accessible data bank of information on clinical research, offering up-to-date information on more than 134,000 federally and privately supported clinical studies of interventions for a wide range of diseases and conditions. Studies listed in the database are conducted in all 50 states and in over 180 countries, and are sponsored by NIH, other Federal agencies, non-profit organizations, and private industry. Summary results information, including adverse events, is required to be submitted for certain studies of approved, Food and Drug Administration (FDA)-regulated drugs, biological products, and devices. More than 7,400 registered studies at ClinicalTrials.gov currently contain results information. The site, launched in 2000, was mandated by Section 113 of the Food and Drug Administration Modernization Act of 1997 and further expanded in accordance with Section 801 of the Food and Drug Administration Amendments Act of 2007.

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

Website: http://www.clinicaltrials.gov/

Developmental Disabilities and Oral Health
With some adaptation of the skills dental professionals use every day, most people with mild or moderate developmental disabilities can be treated successfully in the general practice setting. “Practical Oral Care for People with Developmental Disabilities” equips dental professionals in the community with the basic information they need to deliver quality oral health care to people with special needs. Materials include an overview of the physical, mental, and behavioral challenges common in patients with autism, Down syndrome, cerebral palsy, and intellectual disability, and offer strategies for providing oral care.

NIH Participants: NIDCR, NICHD

Website: http://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/

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: DPCPSI, NCI, NEI, NHLBI, NIA, NIAID, NIDA, NIDCR, NIGMS, NINDS

Genetics and Rare Disease Information Center
The Genetics and Rare Disease Information Center provides accurate, reliable and current information on genetic and rare diseases to patients and families, health care professionals and biomedical researchers.

NIH Participants: NHGRI, NCATS

Website: http://www.genome.gov/10000409

Go4Life
Go4Life, an exercise and physical activity campaign, is designed to help individuals fit exercise and physical activity into their daily life. Motivating older adults to become physically active for the first time, return to exercise after a break in their routines, or build more exercise and physical activity into weekly routines are the essential elements of Go4Life. Go4Life offers exercises, motivational tips, and free resources to help individuals get ready, start exercising, and keep going. The Go4Life campaign includes an evidence-based exercise guide in both English and Spanish, an exercise video, an interactive website, and a national outreach campaign.

NIH Participants: NIA, NCCAM, NHLBI, NIAMS, NIDDK, NIMH, NINDS

Website: http://www.nia.nih.gov/Go4Life

Human Genetic Variation Supplement Project
This project is an inquiry-based instruction program, designed to promote active learning and stimulate student interest in medical topics. NIH 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.

NIH Participants: NHGRI, DPCPSI

Website: http://science-education.nih.gov/Customers.nsf/HSGenetic?OpenForm&CS_11=false&CS_12=false&CS_13=false&CS_22=false&

Introduction to the Principles and Practices of Clinical Research
This course 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. 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 Food and Drug Administration issues. Other areas covered include data management and ethical issues, including protection of human subjects.

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

Website: http://www.cc.nih.gov/training/training/ippcr.html

MedlinePlus, MedlinePlus en español, MedlinePlus Connect
MedlinePlus.gov is a health information portal that brings together NIH and other government and authoritative health information for patients, families, and professionals. It is available in English and Spanish with select information in over 40 other languages. MedlinePlus links to over 28,000 consumer health Web documents in English, and more than 10,000 in Spanish, from nearly every NIH Institute and Center. MedlinePlus Connect allows health organizations and health IT providers to link patient portals and electronic health record systems to MedlinePlus. MedlinePlus is optimized for mobile in English and Spanish at m.medlineplus.gov.

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

Website: http://medlineplus.gov

National Asthma Control Initiative (NACI)
NACI is a multicomponent initiative that engages diverse stakeholders who are concerned about or involved in improving asthma control. Its goal is to bring the asthma care that patients receive in line with evidence-based recommendations from two reports published by the National Asthma Education and Prevention Program: Guidelines for the Diagnosis and Management of Asthma and Guidelines Implementation Panel Report—Partners Putting Guidelines Into Action. NACI is bringing together organizations from local, State, regional, and national levels so that they can share best practices, pool and direct resources, and identify new directions and learning opportunities.

NIH Participants: NHLBI, NIAID, NICHD, NIEHS, NIMHD, NINR

National Biomedical Imaging Archive (NBIA)
The NBIA is a searchable repository of in vivo images that provides the biomedical research community, industry, and academia with access to image archives to be used in the development and validation of analytical software tools that support: 1) Lesion detection and classification; 2) accelerated diagnostic imaging decision; and, 3) quantitative imaging assessment of drug response. NBIA provides access to imaging resources that will improve the use of imaging in today's biomedical research and practice by: Increasing the efficiency and reproducibility of imaging cancer detection and diagnosis, leveraging imaging to provide an objective assessment of therapeutic response, and ultimately enabling the development of imaging resources that will lead to improved clinical decision support.

NIH Participants: NCI, NIAMS, NIBIB

Website: http://ncia.nci.nih.gov/ncia/

National Diabetes Education Program
The National Diabetes Education Program is coordinated by NIH and the Centers for Disease Control and Prevention 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, NIA
HHS OPDIVs Participants: CDC

Website: http://ndep.nih.gov/

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, NIA, NIDDK

Website: http://www.nei.nih.gov/nehep/

National Kidney Disease Education Program
The National Kidney Disease Education Program is an NIH initiative designed to reduce the morbidity and mortality caused by kidney disease and its complications. The program aims to improve early detection of chronic kidney disease, facilitate identification of patients at greatest risk for progression to kidney failure, promote evidence-based interventions to slow progression of chronic kidney disease, and support the coordination of federal responses to chronic kidney disease.

NIH Participants: NIDDK, NHLBI

Website: http://www.nkdep.nih.gov/

Neuroimaging Informatics Tools & Resources Clearinghouse (NITRC)
The NITRC program primarily consists of a Web site, associated communications tools, and scientific and administrative support personnel that foster the neuroimaging informatics community and enable the dissemination and sharing of existing tools and resources. The program was motivated by the recognition that NIH has supported the development of sophisticated, high-quality neuroimaging informatics tools and resources but that the value of these tools and resources is only fully realized with their wide-spread adoption. The NITRC program also includes NITRC-IR (image repository) and NITRC-CE (computational environment). NITRC-IR serves as the central data repository for investigator-acquired data and enables world-wide neuroinformatics data sharing. NITRC-CE is the cloud-based compute environment enabling researchers to analyze neuroinformatics datasets at much reduced cost; this minimizes the digital divide between the reserachers at institutions with high performance computer services and those with more modest resources and budgets.

NIH Participants: NIBIB, NCCAM, NEI, NIA, NIAAA, NICHD, NIDA, NIDCD, NIDCR, NIEHS, NIGMS, NIMH, NINDS, NINR, OBSSR

Website: http://www.nitrc.org/

NIH Celiac Disease Awareness Campaign
This 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 one percent of all Americans suffer from celiac disease, though many have never been diagnosed and are not receiving treatment.

NIH Participants: NIDDK, NIAMS

Website: http://www.celiac.nih.gov/

NIH Osteoporosis and Related Bone Diseases – National Resource Center
This clearinghouse produces and distributes health education materials to patients, health professionals, voluntary and professional organizations, and the media. It provides resources and information on metabolic bone diseases, including osteoporosis, Paget's disease, and osteogenesis imperfecta. The NIH National Resource Center website is a one-stop information source. It includes the popular, interactive web tool, Check Up On Your Bones, which provides bone health information for people of all ages, and gives a personalized strategy to help make bones stronger and healthier.

NIH Participants: NIAMS, NIA, NICHD, NIDCR, NIDDK, ORWH
Other Participants: HHS-OWH

Website: http://www.niams.nih.gov/Health_Info/bone/default.asp

NIHSeniorHealth.gov
This senior-friendly Web site is specially formatted for optimal use by seniors seeking health information. It features health information on a variety of topics pertinent to older adults and includes videos, interactive quizzes, and FAQs to reinforce learning on the Web.

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

Website: http://nihseniorhealth.gov/

Oral Cancer: What African American Men Need to Know
African American men are one of the groups at highest risk for oral cancer — but many do not know it. Black men also have significantly lower survival rates than their white counterparts. This educational campaign provides African American men with information about oral cancer and the importance of detecting the disease early. Materials include a brochure, fact sheet, posters, video, radio public service announcements, and widgets.

NIH Participants: NIDCR, NCI

Website: http://www.nidcr.nih.gov/OralHealth/Topics/OralCancer/AfricanAmericanMen/

SciLife
SciLife is an annual event that provides free information, resources, and organizational tools to help high school students and their parents plan for college and explore career options in the health and medical sciences. NIH joins forces with area leaders in science education to offer the program to people in the Washington, DC., metropolitan area.

NIH Participants: NHGRI, NIDDK

Website: http://science.education.nih.gov/SciLife.nsf/WebPages/Home+Page

Seek, Test, Treat and Retain (STTR) Data Harmonization
Data harmonization is critical to increasing comparability, collaboration, and scientific yield of clinical research. Toward that end, ten awardees funded under the ‘Seek, Test, Treat and Retain in Vulnerable Populations’ Funding Opportunity Announcement have developed and are required, to the extent possible by the parameters of the studies being conducted, to use measures that are consistent across all STTR in vulnerable populations grants in order to harmonize data within the following domains: demographic information, substance use history, HIV risk behaviors, HIV testing status, and access/utilization of HIV treatment.

NIH Participants: NIDA, NIAID, NIMH, OAR

Sudden Death in the Young Registry
The National Institute of Neurological Diseases and Stroke (NINDS) has signed a Memorandum of Understanding with the National Heart, Lung, and Blood Institute (NHLBI) to build on the Centers for Disease Control and Prevention-led Sudden Unexpected Infant Death Case Registry to create a registry of Sudden Death in the Young (SDY), including both Sudden Unexpected Death in Epilepsy (SUDEP) and sudden cardiac death. The SDY will be the first comprehensive surveillance system for SUDEP and sudden cardiac death in the United States, and it will collect and store clinical information and biospecimens for research use.

NIH Participants: NINDS, NHLBI

The Neuroscience Information Framework
The Neuroscience Information Framework is a dynamic inventory of Web based neuroscience resources: data, materials, and tools accessible via any computer connected to the Internet. An initiative of the NIH Blueprint for Neuroscience Research, the Neuroscience Information Framework advances neuroscience research by enabling discovery and access to public research data and tools worldwide through an open source, networked environment.

NIH Participants: NIDA, NCCAM, NEI, NIA, NIAAA, NIBIB, NICHD, NIDCD, NIDCR, NIEHS, NIGMS, NIMH, NINDS, NINR, OBSSR

Website: http://www.neuinfo.org/

Trans-NIH American Indian and Alaska Native Health Communications and Information Work Group
Since 2005, the Trans-NIH American Indian and Alaska Native Health Communications and Information Work Group has provided a forum for health education and communications staff from across NIH. The work group focuses on sharing strategies and learning effective approaches to developing and disseminating health information about American Indian and Alaska Native communities. The goal of the work group is to further educate NIH health communication professionals and share information on socio-cultural issues and other issues that may influence the development and dissemination of effective health communication efforts.

NIH Participants: NIAMS, NCCAM, NCI, NEI, NHGRI, NHLBI, NIA, NICHD, NIDA, NIDCD, NIDCR, NIDDK, NIGMS, NIMH, NINDS, NLM, ORWH

Website: http://www.niams.nih.gov/about_Us/Mission_and_Purpose/Community_Outreach/Multicultural_Outreach/AIAN_WG/default.asp

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 two-page fact sheet on Genetic Testing: What it Means for You and Your Family.

NIH Participants: NHGRI, NCI, NIAMS, NICHD, NINR, NLM, ODP

Website: http://www.genome.gov/19516567

We Can! “Ways to Enhance Children’s Activity and Nutrition”
We Can! is a science-based national education program developed by NIH to help children ages 8-13 stay at a healthy weight through improving food choices, increasing physical activity, and reducing screen time. We Can! focuses on reaching parents and families to influence young people and includes outreach to community organizations, national-level partners, and media to disseminate its messages. Program resources include parent and youth curricula, tip sheets and tools, guidance for community organizations on partnership outreach and participant recruitment/retention, and technical assistance/training to enable communities and partners to adapt the program to fit their specific needs.

NIH Participants: NHLBI, NCI, NICHD, NIDDK

Website: http://wecan.nhlbi.nih.gov

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