Family History Links and Resources
Family History-Related Questions on the Behavioral Risk Factor Surveillance System Survey (BRFSS), the National Health and Nutrition Examination Survey, and the Healthstyles survey for Public Health Care Professionals
Genomics and Family History Survey Questions (including BRFSS):
We now have a comprehensive collection of genomics and family history survey questions from select state and federal population-based surveys from 1999-2007. This compilation includes the Behavioral Risk Factor Surveillance System Survey, the National Health and Nutrition Examination Survey, and the Healthstyles survey. If we have missed any questions, please contact us and we will include your question(s).
How to Create a Family History (Tools/Guides for the Public)
US Surgeon General's Family History Initiative's My Family Portrait
The US Surgeon General, in cooperation with agencies within the US Department of Health and Human Services, has launched a national public health campaign to encourage all American families to learn more about their family history. The campaign includes the tool, My Family Health Portrait, available online or downloadable to your own computer.
Web-based tool : familyhistory.hhs.gov
Downloadable tool and Web version: www.hhs.gov/familyhistory/download.html
Centers for Disease Control and Prevention National Office of Public Health Genomics' s Family History Tools Resource Guide: http://www.cdc.gov/genomics/public/famhix/links.htm
Brigham and Women's Hospital Family Health Tools, Brigham and Women's Hospital has My Family Health Portrait translated into a number of languages: Spanish, Chinese, French, Portuguese, and Polish. These are all downloadable as a PDF that can be filled in by hand. http://www.brighamandwomens.org/FamilyHistory/PDFTools/FamilyHistoryTools.aspx
Family Health History Toolkit, Chronic Disease Genomics Program, Utah Department of Health has a downloadable PDF explaining how to complete a family medical history. http://health.utah.gov/genomics/familyhistory/toolkit.html
Genetic Alliance: A Guide to Family Health History has a downloadable guide for creating a family history. http://www.geneticalliance.org/ksc_assets/pdfs/lg_bk_FHHT.pdf
The National Society for Genetic Counselors explains how to collect family health history and gives contact information for how to find a genetic counselor in your area.
http://www.nsgc.org/consumer/familytree/index.cfm
Family History, Risk Assessment, and Disease
Ohio State University Medical Center's James Cancer Hospital and Solove Research Institute has an interactive tool to estimate cancer risk by reviewing patterns of cancer in a family. www.jamesline.com/patientsandvisitors/prevention/cancergenetics
Resources on Inheritance, Family History, and Monogenic Disease
The Merck Manual Online Medical Library: http://www.merck.com/mmpe/sec22/ch327/ch327b.html
Medline's Medical Encyclopedia: http://www.nlm.nih.gov/medlineplus/ency/article/002048.htm
The University of Utah, Genetic Science Learning Center explains family history and how to use family history information to assess risk. http://learn.genetics.utah.edu/units/health/index.cfm
Family History Information for Healthcare Practitioners
American Medical Association: Family Medical History in Disease Prevention gives resources for the healthcare practicioner. at http://www.ama-assn.org/ama/pub/category/2380.html and also includes a guide to the use of family history in medical practice and information on common genetic conditions. http://www.ama-assn.org/ama1/pub/upload/mm/464/family_history02.pdf
The Family History Public Health Initiative in Genomics and Population Health: Center for Disease Control and Prevention. A guide to the Family History Public Health Intiative. http://www.cdc.gov/genomics/activities/ogdp/2003/chap06.htm
Calculating Genetic Risk, Learn.Genetics, Genetics Science Learning Center, The University of Utah. A user-friendly guide to understanding genetics and risk. http://learn.genetics.utah.edu/units/health/genetic/index.cfm
Family History: The Three-Generation Pedigree, American Family Physician, American Academy of Family Physicians. http://www.aafp.org/afp/20050801/441.html
Evaluating Family History for Preventive Medicine and Public Health, National Office of Public Health Genomics, Centers for Disease Control and Prevention http://www.cdc.gov/genomics/activities/famhx.htm
GeneTests' Screening and Public Health for Care Providers
http://www.genetests.org/servlet/access?id=8888892&key=7UoHM3J-CgbkO&fcn=y&fw=RXC1&filename=/tools/concepts/screening.html
Newborn screening in the United States
Newborn Screening Overview and information about what tests are required in individual states. Also includes links to further information on new born screening. http://www.marchofdimes.com/peristats/tlanding.aspx?reg=99&top=12&lev=0&slev=1
National Conference of State Legislatures' Genetic Technologies Project http://www.ncsl.org/programs/health/genetics.htm
National Newborn Screening and Genetic Resource Center http://genes-r-us.uthscsa.edu/
U.S. National Screening Status Report. Downloadable PDF lists the status of newborn screening in the United States. :http://genes-r-us.uthscsa.edu/nbsdisorders.pdf
GeneTests provides information on genetic testing and its use in diagnosis, management, and genetic counseling. GeneTests: http://www.genetests.org/
Information from the Centers for Disease Control and Prevention on Single Gene Disorders. http://www.cdc.gov/ncbddd/single_gene/default.htm
Glossary of Terms
National Human Genome Research Institute (NHGRI)'s Talking Glossary of Genetic Terms: http://www.genome.gov/10002096
Human Genome Project Information provides more information on Genetic Disease: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml
Pedigree Drawing Software for Healthcare Professionals and for the Public
Cyrillic: www.cyrillicsoftware.com
Progeny: www.progenygenetics.com