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Patients who participate in both a public research biobank - like the NIGMS Human Genetic Cell Repository - and a clinical data registry - such as GenomeConnect - directly increase the amount of data available to scientists, which is critical for advancing research and ultimately achieving better medical care for individuals with rare genetic diseases and chromosomal abnormalities.
Blood or tissue samples donated to the NIGMS Repository can be linked to de-identified clinical data stored in the GenomeConnect patient registry. This "patient portal," as it is also known, is a secure place for patients to voluntarily share and store their detailed information.
Biobank samples linked to curated clinical data are highly valuable to scientists for a variety of purposes, including: discovery of new disease genes, exploration of gene function and expression, and the development of new ways to diagnose, treat and possibly prevent genetic diseases.
Participating in both the GenomeConnect registry and the NIGMS Repository has the following advantages:
Patients with any rare genetic disease or chromosomal abnormality and their immediate family members may be eligible to donate a blood or tissue sample to the NIGMS Repository at the Coriell Institute. To participate:
The GenomeConnect registry, an online portal developed by Geisinger Health System, is open to anyone that has had genetic testing, regardless of diagnosis or genetic test results. This online community allows patients to connect with other individuals with the same genetic changes and to connect patients to research opportunities.
To register, visit genomeconnect.org. For more information, visit www.clinicalgenome.org/genomeconnect/for-participants.