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Table 1.

Key Resources for Providers of Individuals with Secondary Findings

Resource URL Description
ACMG ACT Sheet https://www.acmg.net/ACMG/Medical-Genetics-Practice-Resources/ACT_Sheets_and_Algorithms.aspx algorithmic description of short-term actions a provider can take in the management of an individual with a subset of ACMG59 disorders; prepared by ACMG working group
Clinical Genome Resource (ClinGen), Actionability https://clinicalgenome.org/curation-activities/clinical-actionability/ summaries of actionability assessments for genetic disorders, including evidence pertaining to penetrance of disease features and outcomes associated with specific interventions; reports and scoring provided by the ClinGen pediatric and adult actionability working groups
Clinical Genome Resource (ClinGen), Gene-Disease Validity https://clinicalgenome.org/curation-activities/gene-disease-validity/ aggregation of evidence available for the association of a gene with a given disorder; strength of evidence assessed by the ClinGen gene-disease validity working group
GeneReviews http://www.genereviews.org point-of-care resource for clinicians, written by experts on the specific condition and subject to peer review prior to publication; focus is on genetic disorders
National Comprehensive Cancer Network (NCCN) https://www.nccn.org/ practice guidelines from alliance of cancer centers to guide decision making in the management of cancer, including suspected cancer predisposition syndromes
UpToDate https://www.uptodate.com/ point-of-care resource for clinicians, written by experts on the specific condition and subject to peer review prior to publication