It's important for the public to be aware of what is available to them in the world of genomics and precision medicine. Various resources are available that provide general and disease-specific information about genomics and precision medicine. A list of some resources available to the public is provided below, but additional resources are likely available through your health provider or other groups such as the U.S. National Institutes of Health.
The Genetic Testing Registry (GTR®) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test's purpose, methodology, validity, evidence of the test's usefulness, and laboratory contacts and credentials. This overarching goal of GTR is to advance the public health and research into the genetic basis of health and disease.
Duke Adult Cardiovascular Disease Genetics Clinic: Diagnosing and managing inherited heart disease including hypertrophic cardiomyopathy, long QT syndrome and Brugada syndrome
Duke Hereditary Cancer Clinic: Offering genetic testing and genetic counseling to people diagnosed with cancer, as well as people who may be at risk of developing cancer
Genomics and Diseases: Centers for Disease Control and Prevention (CDC) Office of Public Health Genomics offers information about diseases with a good understanding of the genetic causes and patterns of family history, including some cancers and heart disease.
MeTree Risk Assessment Tool: MeTree is a patient-facing web-based family and personal health history collection and clinical decision support program developed by Duke Center for Precision Medicine.
Watch Lori Orlando, Director of the Center for Precision Medicine, discuss the importance of knowing family health history with WRAL
Genetic Alliance PEER: The Platform for Engaging Everyone Responsibly (PEER) enables participants and their caregivers to share their clinical information and biological specimens within an environment that provides the look and feel of familiar, trusted communities under access-permission rules defined by the participants themselves. PEER provides data-entry, data-query, and privacy-management services that are accessed through standard application programming interfaces (APIs).
PatientsLikeMe: A for-profit health data-sharing platform, transforming the way patients manage their own conditions, changing the way industry conducts research and improve patient care.
GenomeConnect: A unique patient registry that allows you to share your genetic and health information with researchers, clinicians, and others.
Global Genes: One of the leading rare disease patient advocacy organizations in the world, empowering families of children with rare genetic diseases, providing critical connections and resources that equip advocates to become activists for their disease.
Rare Genomics Institute: An international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowd funding mechanism, RGI helps families pursue personalized research projects for diseases not otherwise studied.
Global Genetics and Genomics Community (G3C): Provides interactive unfolding case studies for a self-guided learning experience that simulates a real patient encounter.
Personalized Medicine Coalition (PMC): The PMC was launched in 2004 to educate the public and policymakers, and to promote new ways of thinking about health care. Today, PMC represents a broad spectrum of more than 200 academic, industry, patient, provider and payer communities, seeking to advance the understanding and adoption of personalized medicine concepts and products for the benefit of patients.
Genetics Home Reference: A guide to understanding genetic conditions, genetic testing and basic genetics from the U.S. National Library of Medicine.
Guide to Genetic Health Testing: The Personalized Medicine Coalition has developed a guide about genetic testing and questions patients or consumers may consider prior to undergoing or ordering testing.
Genome: Unlocking Life's Code: Includes educational resources and articles written by genomics researchers communicating the science they're doing in the lab to inform, educate and raise awareness about complex topics in genetics and genomics. Website maintained by the Smithsonian National Museum of Natural History in partnership with National Human Genome Research Institute.
All for Us Research Program : The largest national project of its kind, the All of Us research program aims to recruit 1 million participants from across the US and collect genomic, health and environmental data.
American Society for Human Genetics (ASHG) education: Provides resources for educating students (from K-12 through post-graduate), health care professionals, health policy makers, the media, and the public about human genetics and its translation to health care practice.
Front Line Genomics: A media organization focusing on genomics, serving people and organizations who generate and use genomic information.