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. The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease.
Designed by the Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic and rare diseases.
SERGG is a network of genetics and newborn screening providers in Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Puerto Rico, and the US Virgin Islands.
Network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.
GARD Information Specialists can provide you with current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
Toolkit for Patient-Focused Therapy Development provides information and resources to help patient groups support the process of developing a treatment or cure for their disease(s). The goal is to ensure that patient groups are engaged as essential partners from the beginning to the end of the therapy research and development (R&D) process, whether the therapeutic approach is a drug, biologic, or medical device.
A registry is a collection of standardized information about a group of individuals, such as those living with the same disease, that is used for a variety of specific purposes.
