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Standardizing Genetic Reports
What and Why?
Information in genetic reports
coming from different providers
is diverse and inconsistent. At
times essential data is missing
and families have to reach out
to a geneticist for clarity. REN is
advocating for a universal standardized genetic report inclusive of information most relevant to patients as well
as clinicians and researchers.
This would ensure that data in
genetic reports will be uniform
and useful to all stakeholders.
Lead: Ran Naot,
Nonsense Mutation Foundation
Yssa DeWoody, Ring 14
Take the Survey
REN is gathering data from different genetic epilepsy diagnoses to analyze this issue a make recommendations. Contribute your information by opening our Google Form here and reporting what genetic information is missing in your community.
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