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Documenting the Family History:An Overview of Available Tools Kristin Peterson, MS, CGC Office of Genomics and Disease Prevention Centers for Disease Control and Prevention Overview Collecting family history information Who, How, What and Why Overview of different approaches and formats Examples of available tools Collecting Family History Who? Providers, Insurers, Employers, Individuals, Genealogists, Courts, Social Services, Researchers How? Pedigree, table or chart, questionnaire, narrative Collecting Family History What? Medical and health info in families, social and cultural traditions, behaviors and habits that impact health, environmental exposures Why? Provide care, assess risks, provide anticipatory guidance, disease prevention, adoption, social services, genealogy, research Family History Tools: Multi-Generation Pedigree The gold standard Captures large quantities of information Compact, standardized format Amenable to analysis A living document Family History Tools: Multi-Generation Pedigree Requires training and skill for maximal effectiveness Time consuming to collect Usefulness as screening tool? So many tools, so little time… Many tools available Common purpose Diagnosis of a present medical condition Risk assessment to prevent a medical condition Several formats Several sources Descriptive Evaluation Criteria Tool Format: Pedigree, table, questionnaire Degree of relationship: 1st, 2nd or 3rd degree Length of tool: 2 pgs, 2 pgs Source of tool: Med or pop lit, gov, advocacy or professional org, social services Types of questions: Broad, focused, disease-specific, non-prescribed Information collected: Genetic, exposures, medical, cultural, behavioral, social Intended use(s): Diagnosis, risk assessment, planning, prevention, research Descriptive Evaluation Criteria: Screening Pedigree Tool Format: Pedigree Degree of relationship: 2nd degree Length of tool: 2 pgs Source of tool: advocacy organization Types of questions: focused,
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