National Human Genome Research Institute

Quick Links for Patient Care

• Provider Tools, Toolkits and Resources
• Definition of Genetic Terms
• Information About Specific Diseases
• Tools for Collecting Family History
• Locating a Genetic Clinic and Genetics Health Professionals
• Clinical Trials Resources

Provider Tools, Toolkits and Resources

ASHG Global Virtual Meeting: Genetics in Your Clinic: What You Can and Should Do Now: Toolkit Resources for Primary Care Providers
March 22, 2016. Bob Wildin, M.D. and Jean Jenkins, Ph,D., R.N., F.A.A.N.

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Definitions of Genetic Terms

• Genetics Home Reference [ghr.nlm.nih.gov]
• Talking Glossary of Genetic Terms

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Information About Specific Diseases

General Information

• GeneReviews [ncbi.nlm.nih.gov]
• Genetic Alliance [geneticalliance.org]
• National Library of Medicine Health Services Research Information Central [nlm.nih.gov]
• Online Mendelian Inheritance in Man (OMIM) [ncbi.nlm.nih.gov]

Rare Diseases

• Genetics and Rare Diseases Information Center (GARD)
• Office of Rare Diseases Research (ORDR) [rarediseases.info.nih.gov]
• Online Mendelian Inheritance in Man (OMIM) [ncbi.nlm.nih.gov]
• Disease InfoSearch: The Genetic Alliance [diseaseinfosearch.org]

Cancer

• National Cancer Institute, Physician Data Query (PDQ) [cancer.gov]
• NCI Colorectal Cancer Risk Assessment Tool [cancer.gov]

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Tools for Collecting Family History

• My Family Health Portrait [familyhistory.hhs.gov]
  The Surgeon General's Family History Initiative and Tool

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Locating a Genetics Clinic and Genetics Health Professionals

• Genetic Testing Registry [ncbi.nlm.nih.gov]
• National Cancer Institute - Cancer Genetics Services Directory [cancer.gov]
• National Society of Genetic Counselors [nsgc.org] - Find a Counselor

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Clinical Trials Resources

• National Institutes of Health Clinical Trials [clinicaltrials.gov]
• National Institutes of Health, Clinical Center [clinicalcenter.nih.gov]
• Clinical Research
• Current NHGRI Clinical Studies

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Last Updated: July 6, 2016