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. 2010 Jan 4;14(4-5):222–237. doi: 10.1159/000273689

Table 1.

Complete list of family history tools identified

Tool Name of tool Available at/from: Description Included in assessment (Y/N)
Multimedia
1

  • Aurora Health Care:

  • Hereditary Cancer Risk Assessment Tool

 http://www.aurorahealthcare.org/services/cancer/geneticcounseling/screening-tool.asp, accessed December 2008 Web tool assessing family history risk for hereditary cancers. Y – table 2 and 3
2

  • Case Western University:

  • Genetic Risk Easy Assessment Tool (GREAT)

 https://family.case.edu/, accessed August 4, 2008. See also Acheson et al. (2006) [31] Computer tool that collects and displays family history of cancer. Y – table 2
3

  • Centers for Disease Control and Prevention:

  • Family Healthware™

 Available from developer, accessed September 2008 Computer tool assessing family history risk for 6 diseases: coronary heart disease, stroke, diabetes, and colon, breast and ovarian cancer. Y – table 2
4

  • Dana-Farber Cancer Institute:

  • Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer)

 http://www.dana-farber.org/pat/cancer/gastrointestinal/crc-calculator/default.asp, accessed December 2008 Web tool assessing risk for Lynch syndrome. N – risk assessment for Lynch syndrome, not focused on family history.
5

  • Duke University Medical Center:

  • The Cancer Risk Intake System (CRIS)

 See Skinner et al. (2005) [32] Touchscreen, tablet computer to assess risk for breast, ovarian, and colorectal cancers. N – risk assessment for cancer, not focused on family history.
6

  • Families for Depression Awareness:

  • Mental Health Family Tree Program

 http://www.familyaware.org/familytree/, accessed December 2008 Web tool to collect family health history information. Targets mental health. Y – table 2
7

  • Harvard School of Public Health:

  • Disease Risk Index

 http://www.diseaseriskindex.harvard.edu/update/, accessed December 2008 Web tool assessing risk for developing 5 diseases: cancer, diabetes, heart disease, osteoporosis, and stroke. N – health risk appraisal tool, not focused on family history.
8

  • Hearst Women's Network:

  • Real Age

 http://www.realage.com/health_guides/BreastCancer/introduction.asp, accessed December 2008 Web tool assessing risk for breast cancer. N – general risk assessment for breast cancer, not focused on family history.
9

  • Massachusetts General Hospital:

  • HughesRiskApps

 See Ozanne et al. (2009) [13] Computerized system to identify women at risk for hereditary breast/ovarian cancer. N – developed for use in primary care offices and risk assessment clinics. Targets physicians/health care providers.
10

  • Munroe-Meyer Institute for Genetics and Rehabilitation and the Eppley Cancer Center University of Nebraska Medical Center:

  • Medical Family Tree

 http://appl.unmc.edu/gencancer/, accessed August 28, 2008 Web tool assessing family history risk for cancer. Y – table 2
11

  • Myriad Genetic Laboratories, Inc.:

  • Cancer History Guide

 http://www.myriadtests.com/cancerhistory.htm, accessed August 4, 2008 Web tool to collect information on family history of cancer. Y – table 2
12

  • NorthShore University HealthSystem (Formerly Evanston Northwestern Healthcare):

  • My Generations

 https://mygenerations.enh.org/enhweb/newuser.asp, accessed August 28, 2008 Web tool assessing family history risk for cancer. Y – table 2
13

  • Norwich Union:

  • Health Tree

 http://www.norwichunion.com/healthtree/index.htm, accessed August 4, 2008 Web tool to collect family health history information. Y – table 2
14

  • Ohio State University Comprehensive Cancer Center:

  • Family Cancer History Questionnaire-Touchscreen Kiosk

 See Westman et al. (2000) [33] Computer touchscreen kiosk tool to collect family history of cancer. N – developed for use in hospital system.
15

  • Ohio State University Comprehensive Cancer Center:

  • Family HealthLink (formerly JamesLink)

 http://www.jamesline.com/patientsandvisitors/prevention/cancergenetics/, accessed August 28, 2008. See also Kelly et al. (2008) [34] Web tool assessing family history risk for cancer and coronary heart disease (CHD). Y – table 2
16

  • Penn State Cancer Institute:

  • Cancer Risk Assessment

 http://www.hmc.psu.edu/cancer/outreach_education/community/cancerriskassessments/cancer_risk_assessment.htm, accessed December 2008 Web tool assessing risk for colon cancer. Y – table 2
17 http://www.itrunsinmyfamily.com/, accessed June 2009 Web family pedigree tool to collect family history information. Y – table 2
18

  • U.S. Surgeon General's Family History Tool:

  • My Family Health Portrait (Web version-updated version January 2009)

 https://familyhistory.hhs.gov/, accessed May 26, 2009 Web tool that collects family history for 6 diseases: coronary heart disease, stroke, diabetes, and colon, breast and ovarian cancer. Y – table 2
19

  • University College London/University of Cambridge:

  • Genetic Risk Evaluation Assessment in the Clinical Environment (GRACE)

 See Braithwaite et al. (2005) [35] Prototype computerized hereditary breast cancer risk assessment tool. N – developed for use in clinical setting.
20

  • University of Pennsylvania Abramson Cancer Center:

  • The Penn II BRCA1 and BRCA2 Mutation Risk Evaluation Model Official Web Site

 https://www.afcri.upenn.edu:8022/itacc/penn2/index.asp, accessed December 2008 Web tool assessing risk for BRCA1 or BRCA2 mutations. N – risk assessment for BRCA mutation status, not focused on family history.
21

  • University of Virginia:

  • Health Heritage

 http://www.healthsystem.virginia.edu/internet/phs/HealthHeritage/home.cfm, accessed August 4, 2008. See also Kinze et al. (2002) [36] (Demo) Web tool assessing family history risk for 89 health conditions. Y – table 2
Websites
22

  • ADHD Support:

  • Apples on the Family Tree

 http://www.adhdsupport.com/adhd-evaluation-tool.aspx, accessed December 2008 Web page detailing how to collect family history of symptoms or diagnoses related to ADHD. Includes a family history tree for collecting information. Y – table 2 and 3
23

  • Centre for Genetics Education of the NSW Genetics Service:

  • Family Health History Can Matter (My Family Health Record)

 http://www.genetics.com.au/fhh/fhhhome.htm, accessed June 2009 Web site detailing the importance of family history and how to collect family history information. Includes a form (My Family Health Record) for collecting family history. Y – table 2 and 3
24

  • Howard University – National Human Genome Center:

  • Collect Your Family Health History

 http://www.genomecenter.howard.edu/community/CollectYourFamilyHealthHistory.htm, accessed December 2008 Web page detailing how to collect family health history information. Y – table 2
25

  • March of Dimes:

  • Genetics and Your Practice

 http://www.marchofdimes.com/gyponline/index.bm2, accessed December 2008 Web site providing information and resources on integrating genetics into patient care. Includes information on how to collect a family health history. N – targets physicians/health care providers.
26

  • Mayo Clinic:

  • Medical history: How to Compile Your Medical Family Tree

 http://www.mayoclinic.com/health/medical-history/HQ01707, accessed August 4, 2008 Web page detailing how to collect family health history information. Y – table 2
27

  • National Society for Genetic Counselors:

  • Your Family History: Your Future

 http://www.nsgc.org/consumer/familytree/index.cfm, accessed August 4, 2008 Web page detailing how to collect family health history information. Y – table 2
Print
28

  • American Heart Association:

  • Go Red for Women Family Tree

 http://www.americanheart.org/presenter.jhtml?identifier=3059464, accessed December 2008 Family history tree for mapping out family health history. Targets heart disease among women. Y – table 2 and 3
29

  • American Heart Association:

  • The Heart of Diabetes

 http://www.americanheart.org/presenter.jhtml?identifier=3044888, accessed December 2008 Family history tree for mapping out family health history. Targets diabetes and related conditions. Y – table 3
30

  • American Heart Association-Wisconsin Stroke Committee:

  • Reproducible Family Health History Tree

 http://www.americanheart.org/presenter.jhtml?identifier=3056055, accessed December 2008 Family history tree for mapping out family health history. Targets stroke and high blood pressure. Y – table 3
31

  • American Medical Association:

  • Adult Family History Form

 http://www.ama-assn.org/ama/pub/category/2380.html, accessed August 25, 2008 Questionnaire to collect family history information. Y – table 3
32

  • American Medical Association:

  • Family Medical History in Disease Prevention

 http://www.ama-assn.org/ama/pub/category/2380.html, accessed August 4, 2008 Booklet detailing the importance of family history and the ‘red flags’ for inherited conditions. Includes information on how to collect a family health history. N – targets physicians/health care providers.
33

  • American Society of Human Genetics & Genetic Alliance:

  • Family History Fact Sheet

 http://www.ashg.org/press/consumers.shtml#4, accessed August 4, 2008 Fact sheet describing how to collect a family health history and draw a family tree. Y – table 2
34

  • Brigham and Women's Hospital, Division of General Medicine:

  • Family History Form

 See Murffetal. (2007) [37] Form to collect family history of cancer and other diseases. N – not available in article.
35

  • Centers for Disease Control and Prevention:

  • Family History Is Important for Health

 http://www.cdc.gov/genomics/public/famhix/fs.htm, accessed August 28, 2008 Fact sheet detailing the importance of family history and how to learn about own family history. Y – table 2
36

  • Children's Hospital of Eastern Ontario Eastern Ontario Regional Genetics Program:

  • Family History Assessment Tool

 See Gilpin et al. (2000) [38] Tool to record family history of cancer. N – risk assessment tool targeting physicians/health care providers.
37

  • Cincinnati Children's Hospital Medical Center:

  • Collecting Your Family's Medical History

 http://www.cincinnatichildrens.org/svc/alpha/h/hereditary-cancer/visit/before.htm, accessed August 28, 2008 Brochure describing how to collect family health history. Y – table 2
38 Comenius University See Hlavaty et al. (2005) [39] Questionnaire to collect family history of colorectal cancer. N – not available in article.
39

  • Dana-Farber Cancer Institute and Massachusetts General Hospital:

  • Family History Questionnaire

 See Grover et al. (2004) [40] Questionnaire to collect family history of cancer. N – not available in article.
40

  • Genetic Alliance:

  • Does It Run in the Family? A Guide to Family Health History

 http://www.geneticalliance.org/ws_display.asp?filter=ccfhh, accessed August 28, 2008 Customizable booklet detailing how to collect family health history information. Y – table 2
41

  • Genetic Alliance:

  • Family Health History Questionnaire

 http://geneticalliance.org/ws_display.asp?filter=ccfhh, accessed August 4, 2008 Questionnaire to collect family history information. Y – table 2 and 3
42

  • Genetic Alliance:

  • Healthcare Provider Card

 http://geneticalliance.org/ws_display.asp?filter=ccfhh, accessed August 4, 2008 Questionnaire to collect family history information. Information available for healthcare provider on how to use family history to determine risk. N – targets physicians/health care providers.
43

  • Genetics in Primary Care (GPC) project, Family History Working Group:

  • Genetic Tools Family Disease Checklist

 http://www.genetests.org/servlet/access?id=88888928&key=Cdbs0RTAjlynd&fcn=y&fw=AO5o&filename=/tools/concepts/checklist.html, accessed September 25, 2008 Checklist to track diseases in the family. Y – table 3
44

  • Genetics in Primary Care (GPC) project, Family History Working Group:

  • Your Family Medical History

 http://www.genetests.org/servlet/access?id=8888892&key=CFY3dMa06Ml4r&fcn=y&fw=7x1-&fllename=/tools/concepts/medHist.html, accessed September 25, 2008 Questionnaire to collect family history information. Y – table 3
45

  • Heartland Regional Coordinating Center University of Oklahoma Health Sciences Center:

  • Family Health History Toolkit

 http://www.heartlandfamilyhistory.org/familyhistorytools.htm, accessed September, 2008 Toolkit detailing how to collect family health history. Y – table 2
46

  • Helsinki University Central Hospital, Department of Oncology:

  • Family History Questionnaire

 See Eerola et al. (2000) [41] Questionnaire to collect family history of breast and ovarian cancer. N – not available in article.
47

  • Howard University – National Human Genome Center:

  • Planning for a Healthy Future: The Importance of Family Health History

 National Human Genome Center, Howard University Booklet developed for African Americans detailing how to collect, use and share family history information. Includes a family history tree for collecting information. Y – table 2 and 3
48

  • Indiana University School of Medicine Department of Medical Genetics:

  • Family History Questionnaire

 See Cole etal. (1978) [42] Questionnaire to collect family history information. Y – table 3
49

  • Institute for Cultural Partnerships:

  • Does It Run in the Family? A Guide to Family Health History

 www.culturalpartnerships.org/documents/DoesItRun.pdf accessed December 2008 Booklet detailing how to collect family history information. N – similar to Genetic Alliance Tool that was included.
50

  • Lahey Clinic Foundation Familial Cancer Risk Assessment Center:

  • Cancer Risk Evaluation Packet

 http://www.lahey.org/Medical/FCRAC/FCRAC_FI_FHT.asp, accessed December 2008 Packet including questionnaires for collecting family history of cancer. Y – table 2 and 3
51 Leiden University Medical Centre See de Jong et al. (2006) [43] Questionnaire to collect family history of colorectal cancer. N – not available in article.
52

  • March of Dimes:

  • Family Health Questionnaire (Prenatal)

 http://www.marchofdimes.com/pnhec/4439_1109.asp, accessed August 4, 2008 Preconception/prenatal questionnaire to collect family history information. Y – table 2 and 3
53

  • Massachusetts General Hospital and Lahey Clinic:

  • Family History Questionnaire

 See Hughes et al. (2003) [44] Questionnaire to collect family history of breast and ovarian cancer. N – not available in article.
54

  • Memorial University of Newfoundland and the University of Toronto:

  • Family History Questionnaire

 See Green et al. (2007) [45] Questionnaire to collect family history of colorectal cancer. N – not available in article.
55

  • Michigan Department of Community Health:

  • Family History and High Blood Pressure

 http://www.cdc.gov/pcd/issues/2005/apr/pdf/04_0134_01.pdf accessed August 25, 2008. See also Theisen (2005) [22] Handout that includes a worksheet to collect family history information on high blood pressure, heart disease, and stroke. Y – table 2 and 3
56

  • Michigan Department of Community Health:

  • Family History and Your Health

 http://www.migeneticsconnection.org/factcards.shtml, accessed December 2008 Fact sheet detailing how to collect family history information. Y – table 2
57

  • National Breast Cancer Centre:

  • Family History Questionnaire

 See Fisher et al. (2003) [46] Questionnaire to collect family history of breast cancer. Y – table 2 and 3
58

  • National Coalition for Health Professional Education in Genetics:

  • Family History Questionnaire

 http://pa.nchpeg.org/, accessed August 4, 2008 Questionnaire to collect family history information. Y – table 3
59 New York Hospital-Cornell Medical Center, Strang Cancer Prevention Center See Breuer etal. (1993) [47] Form to collect family history of cancer. N – not available in article.
60

  • New York State Department of Health:

  • Sample Cancer Family History Questionnaire

 http://www.health.state.ny.us/nysdoh/cancer/obcancer/appendll.htm, accessed December 2008 Questionnaire to collect family history of cancer. Y – table 3
61 Northwestern University See Frezzo et al. (2003) [48] Questionnaire to collect family history information. N – not available in article.
62 Ontario Cancer Institute See Theisetal. (1994) [49] Questionnaire to collect family history information. N – not available in article.
63

  • Prevent Cancer Foundation:

  • Guide to Preventable Cancer

 http://orders.asapmail.com/sqlimages/crpf/preventable%20cancer%20guide%209-07.pdf accessed December 18, 2008 Booklet that includes a family history medical chart/tree to collect family history information. Y – table 2 and 3
64

  • Princess Margaret Hospital:

  • Family History Questionnaire

 See Armel et al. (2009) [50] Questionnaire to collect family history of cancer. Y – table 2 and 3
65 Royal Melbourne Hospital, Familial Cancer Centre See Gaffetal. (2004) [51] Questionnaire to collect family history of prostate cancer. N – not available in article.
66

  • U.S. Surgeon General's Family History Tool:

  • My Family Health Portrait (Paper version)

 http://www.hhs.gov/familyhistory/order.html, accessed August 28, 2008 Questionnaire to collect family history information. Y – table 2 and 3
67

  • University of Bristol:

  • The Questionnaire

 See House etal. (1999) [52] Questionnaire to collect family history of colorectal cancer. Y – table 3
68

  • University of Cambridge:

  • Questionnaire on Cancer Family History

 See Leggatt et al. (1999, 2000) [53, 54] Questionnaire to collect family history of cancer. N – not available in article.
69

  • University of Chicago:

  • Cardiology Family History Questionnaire

 See MacLeod et al. (2008) [55] Questionnaire to collect family history of cardiovascular disease. Y – table 2 and 3
70

  • University of Cincinnati Family History Working Group:

  • Family Health History

 http://www.cahs.uc.edu/gc/FamilyHistoryProject.htm, accessed September 2008 Fact sheet describing how to collect a family health history. Y – table 2
71 University of Hawaii See Glanzetal. (1999) [56] Questionnaire to collect family history of cancer focusing on colorectal cancer. N – not available in article.
72

  • University of Liverpool:

  • Familial Cancer Assessment Tool

 See Benjamin et al. (2003) [57] Questionnaire to collect family history of cancer. N – targets physicians/health care providers.
73

  • University of Nottingham:

  • Family History Questionnaire

 See Qureshi et al. (2005) [58] Questionnaire to collect family history information. N – not available in article.
74 University of Queensland Medical School See Aitken etal. (1995) [59] Questionnaire to collect personal and family medical history of colorectal cancer. N – not available in article.
75

  • University of Virginia Health Systems:

  • Are You at Risk for Hereditary Breast Cancer?

 See Cohn et al. (2008) [60] Brochure to facilitate the collection and recognition of hereditary breast and ovarian cancer syndrome. Y – table 2 and 3
76

  • Utah Department of Health:

  • Family Health History Toolkit

 http://health.utah.gov/genomics/familyhistory/toolkit.html, accessed August 28, 2008 Toolkit detailing how to collect family health history. Includes a family history tree for collecting information. Y – table 2 and 3
77

  • Virginia Commonwealth University:

  • Family History Questionnaire

 See Quillin et al. (2006) [61] Questionnaire to collect family history of cancer. N – not available in article.
78

  • Wake Forest University:

  • Family History Form

 See Hurt etal. (2001) [62] Form to collect family history of cancer. N – not available in article.

Note: This table does not include tools that are known to be in development, unavailable from the developer, or part of electronic hospital record systems.