Recontacting registry participants with genetic updates through GenomeConnect, the ClinGen patient registry.

Juliann M SavattDanielle R AzzaritiDavid H LedbetterEmily PalenHeidi L RehmErin Rooney RiggsChrista Lese Martin

Published in: Genetics in medicine : official journal of the American College of Medical Genetics (2021)

Patient registries can provide a mechanism for patients and their providers to remain informed about changes to the interpretation and clinical significance of their genetic results, leading to important implications for care.

Keyphrases

end stage renal disease
case report
healthcare
newly diagnosed
chronic kidney disease
genome wide
ejection fraction
palliative care
peritoneal dialysis
gene expression
patient reported outcomes
patient reported