The following inventory is a compilation of family history tools and guidelines. A brief summary of each tool includes the format, content, associated interventions, and the website where the tool can be found. The list is not exhaustive but includes tools and guidelines that were developed for the general public and are accessible through the internet. New tools and guidelines will be added as they become available. If you are aware of other family history tools that should be added to the list, please send an e-mail to NOPHG Communications.
- Family Healthware™
Centers for Disease Control and Prevention
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Title: Family Healthware™
Format: An interactive web-based tool that collects information on personal health behaviors and screening, and family health history. Data is saved and stored in a database. Information can be updated as needed. Printable report includes drawing of family tree, familial risk assessment, and personalized prevention recommendations.
Availability: Currently being evaluated in a clinical trial. Also available for licensure and research studies. Contact genetics@cdc.gov
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Heart disease, stroke, diabetes, colon cancer, breast cancer, and ovarian cancer.
Behavioral/Environmental Factors: Health behaviors - smoking, exercise, diet, aspirin, alcohol. Screening – cholesterol, blood pressure, blood glucose, fecal occult blood test, colonoscopy, sigmoidoscopy, clinical breast exam, mammogram.
Risk Assessment: Algorithms assess familial risk for each disease. User classified as having strong, moderate or weak familial risk.
Family History-Based Interventions: Algorithms assess familial risk and behaviors and screening and generate prevention recommendations. Share information with family members and health care providers.
Comments: CDC website has family history resources and materials for the general public and health professionals and more information about Family Healthware. http://www.cdc.gov/genomics/ |
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Title: Family History Tools - Prenatal Genetic Screening Questionnaire, Pediatric Clinical Genetics Questionnaire, Adult Family History Form
Format: Can be completed on-line and printed. Data is not saved.
Availability: http://www.ama-assn.org/ama/pub/category/2380.html
Target Population/Audience: Physicians and patients
Languages: English
Completed by: Physician or patient
Diseases/Conditions: Numerous diseases and conditions across all life stages.
Behavioral/Environmental Factors: Pregnancy exposures.
Risk Assessment: None
Family History-Based Interventions: The “Family Medical History in Disease Prevention” pamphlet for physicians describes the value in obtaining a family medical history and how knowledge of family history can improve patient care.
Comments: Printed copies of the “Family Medical History in Disease Prevention” pamphlet and a patient pocket guide with instructions on completing a family history are available on the web or can be ordered by sending an email request to srt@ama-assn.org. |
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Title: The Heart of Diabetes Family History Tree
Format: An online tool that draws a family tree and allows you to make a record of heart disease and stroke risk factors, including diabetes, for your blood relatives. Requires free registration. Data is encrypted and not accessible to the AHA.
Availability: http://www.americanheart.org/downloadable/heart/
1170790567218Family%20Tree%20Flyer%20b-w_2007.pdf (630 KB)
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Diabetes, heart attack, high blood pressure, high total cholesterol or LDL cholesterol, Low HDL cholesterol, obesity, stroke.
Behavioral/Environmental Factors: Physical activity, smoke and second hand smoke
Risk Assessment: None
Family History-Based Interventions: Share information with family members and health care providers.
Comments: If you have questions for your family members about their health conditions, you can send them an e-card from this site to get the answers.
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Title: My Family Health Portrait
Format: Web-based tool can be completed on-line with data stored on individual’s computer. Printable report includes table of family health history and drawing of family tree. A print family history tool is also available.
Availability: http://www.hhs.gov/familyhistory Print version can be downloaded from the website.
Target Population/Audience: General population
Languages: English, Spanish
Completed by: Consumer
Diseases/Conditions: Heart disease, stroke, diabetes, colon cancer, breast cancer, and ovarian cancer, and open ended fields to include diseases of concern to the individual.
Behavioral/Environmental Factors: None
Risk Assessment: None
Family History-Based Interventions: Share information with family members and health care providers.
Comments: Website has family history resources and materials for the general public and health professionals. |
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--------------------------------------------------------------------------------------- Title: Compiling Your Family Health History: A Self-Care Handbook
Format: Guidelines for collecting family health history and templates for recording the information.
Availability: http://img.channing-bete.com/M400L/cbc_M400L.html for $2.99 per booklet.
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Encouraged to include cancer, heart disease, diabetes, lung disease, mental conditions, and other conditions.
Behavioral/Environmental Factors: None
Risk Assessment: None
Family History-Based Interventions: Encouraged to share information with health care provider and family members.
Comments: Easy to understand information that addresses: what is family health history; why is it important; how can family health history help prevent disease; how to gather a family history; and what to do with the information.
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Title: Does It Run in the Family? A Guide to Family Health History
Format: Booklet describing the importance of family health history and guidelines for collecting and recording family history.
Availability: Draft materials can be viewed and downloaded as a PDF file from: http://www.geneticalliance.org
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Encouraged to include major diseases or health conditions as well history of surgeries and medications used.
Behavioral/Environmental Factors: Encouraged to collect lifestyle information such as occupation, nutrition, exercise, leisure activities, and habits.
Risk Assessment: None
Family History-Based Interventions: Share information with family members and health care providers.
Comments: Detailed information on how to interview family members, what information to collect, and how to record and save information.
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--------------------------------------------------------------------------------------- Title: Family Health and Heredity
Format: Online information describing the importance of family health history and guidelines for collecting and recording family history. Includes a sample pedigree illustrating hypertrophic cardiomyopathy.
Availability: http://www.ngsgenealogy.org/comfamhealth.cfm
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Encouraged to include chronic ailments, major illnesses and surgery.
Behavioral/Environmental Factors: None
Risk Assessment: None
Family History-Based Interventions: None
Comments: Emphasizes the value of charting family health history to individuals already interested in genealogy.
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Title: How to Compile Your Family Medical History
Format: Online information about the importance of family health history and guidelines for collecting and recording family history.
Availability: http://www.mayoclinic.com/health/medical-history/HQ01707
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Encouraged to include major diseases or health conditions such as cancer, heart disease, stroke, diabetes, depression, obesity, Alzheimer’s disease, blindness, deafness.
Behavioral/Environmental Factors: Encouraged to include health habits such as smoking, diet, exercise.
Risk Assessment: None
Family History-Based Interventions: Share information with health care provider.
Comments: Additional resources on website. |
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Title: Your Family History
Format: Online information about the importance of family health history and guidelines for collecting and recording family history. A form for recording family history information, “Family Health History Form” can be downloaded as a PDF file.
Availability: http://www.marchofdimes.com/pnhec/4439_1109.asp
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Numerous diseases and conditions across all life stages.
Behavioral/Environmental Factors: Lifestyle habits such as smoking.
Risk Assessment: None
Family History-Based Interventions: Share information with family members and health care providers.
Comments: Can order multiple copies of the health form from the March of Dimes. |
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Title: Your Family History - Your Future
Format: Guidelines for collecting family medical history and drawing a pedigree.
Availability: http://www.ashg.org/genetics/ashg/educ/007.shtml ,
http://www.geneticalliance.org and can be downloaded as a pdf file from NSGC website.
Target Population/Audience: General population
Languages: English
Completed by: Consumer
Diseases/Conditions: Encouraged to include cancer, heart disease, diabetes, asthma, mental illness, high blood pressure, stroke, kidney disease, alcoholism, birth defects, learning problems, mental retardation, and vision or hearing loss at a young age.
Behavioral/Environmental Factors: Encouraged to include smoking, diet, exercise habits, overweight for family members with medical problems.
Risk Assessment: None
Family History-Based Interventions: Encouraged to share information with doctor or see a genetics specialist if have concerns about family history.
Comments: Detailed information on how to draw a pedigree. |
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Provides link to non-governmental sites and does not necessarily represent the views of the Centers for Disease Control and Prevention. |
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