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http://rarediseases.info.nih.gov/GARD/Default.aspx

Genetic and Rare Diseases Information Center (GARD) is a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic conditions and rare diseases. GARD provides timely access to experienced information specialists who can furnish current and accurate information about genetic and rare diseases. So far, GARD has responded to 27,635 inquiries on about 7,147 rare and genetic diseases. Requests come not only from patients and their families, but also from physicians, nurses and other health-care professionals. GARD also has proved useful to genetic counselors, occupational and physical therapists, social workers, and teachers who work with people with a genetic or rare disease. Even scientists who are studying a genetic or rare disease and who need information for their research have contacted GARD, as have people who are taking part in a clinical study. Community leaders looking to help people find resources for those with genetic or rare diseases and advocacy groups who want up-to-date disease information for their members have contacted GARD. And members of the media who are writing stories about genetic or rare diseases have found the information GARD has on hand useful, accurate and complete. GARD has information on: :- What is known about a genetic or rare disease. :- What research studies are being conducted. :- What genetic testing and genetic services are available. :- Which advocacy groups to contact for a specific genetic or rare disease. :- What has been written recently about a genetic or rare disease in medical journals. GARD information specialists get their information from: :- NIH resources. :- Medical textbooks. :- Journal articles. :- Web sites. :- Advocacy groups, and their literature and services. :- Medical databases.

Proper citation: Genetic and Rare Diseases Information Center (RRID:SCR_008695) Copy   

•   Source: SciCrunch Registry

http://sigs.nih.gov/biospecimens/Pages/default.aspx

The mission of the Biospecimens Interest Group is to serve as an educational and tutorial vehicle for disseminating information, best practices, regulations, and ethical/legal information formulated and issued by various NIH offices, federal agencies and other leading biospecimens organizations. Please join our listserv so we can inform you about the date, time and the place for future meetings, speakers, website and other activities --- https://list.nih.gov/cgi-bin/wa?SUBED1=biospecimens&A=1. Meetings and seminars are videocast. Vision: #. To create a place where all stakeholders may exchange scientific data, ideas, and information concerning the creation and use of high quality biospecimens for research, assay validation, technology development and other appropriate uses. #. To promote and facilitate interaction between NIH intramural and extramural stakeholders who are interested in and involved with a variety of clinically-oriented, translational research projects using high quality biospecimens. #. To encourage leading stakeholders to address critical elements in study design and statistical analysis of data to facilitate the production of accurate, optimal, and clinically meaningful results (best outcome). #. To educate stakeholders about the potential barriers and obstacles that may obstruct the sharing and collaboration between stakeholders across different organizations and countries. #. To increase the awareness for the necessity of high quality biospecimens and the harmonization, and when appropriate, standardized procedures (best practices, SOPs) for annotating, collecting, transporting, processing, storing, and sharing biospecimens to ensure optimal reproducibility of outcomes and the privacy of the patients (donors) through adherence to the ethical and legal requirements associated with the use of biospecimens. #. To provide the connectivity to various biorepositories and biospecimens around the world, especially those containing rare and difficult to get biospecimens.

Proper citation: NIH Biospecimens Interest Group (RRID:SCR_004903) Copy   

•   Source: SciCrunch Registry