Protocol - Family Health History
My Family Health Portrait (MFHP) is a free Internet-based tool that allows individuals to record their family health history. It is used to collect information regarding the individual and their close biological relatives.
The MFHP is an an Internet-based tool that is easy to access on the Web and simple to fill out. It assembles family health information and makes a "pedigree" or family tree that can be downloaded. It is private--it does not keep information. It provides a health history that can be shared among family members or sent to health care practitioners.
The Rare Genetic Conditions Working Group (WG) acknowledges that the collection and potential release of individual or family health information may impact a person’s ability to obtain life, disability, and long-term insurance. To increase the knowledge and protection of research participants, the WG encourages investigators to be aware of the Genetic Information Nondiscrimination Act (GINA) and the availability of an National Human Genome Research Institute (NHGRI) Certificate of Confidentiality.
The My Family Health Portrait (MFHP) is available at the following website: https://familyhistory.hhs.gov/FHH/html/index.html
The online tool includes questions about the individual followed by questions about each close family member. Once the required fields and health information are entered into the online tool, a pedigree containing all relevant information can be generated.
Important notes regarding the features and limitations of the MFHP:
--Although the MFHP can generate a pedigree, it does not store the information. But the information can be downloaded by the user and reloaded anytime for updates.
--Information from the MFHP is not meant to substitute for professional medical advice or care. Hence the MFHP does not provide personalized medical advice for an individual/their relatives for any condition or treatment.
--Users of the MFHP should consult a health care professional regarding medical advice/concerns/implications/questions due to their pedigree.
--The MFHP can be incorporated into an organization’s suite of electronic information services without charge or royalty; however, an End User Agreement is required. If the MFHP is incorporated into an organization, customization is permitted; however, the standards-based features must be preserved. Details on the incorporation process are available by selecting the "Learn More About My Family Health Portrait" on the MFHP website.
--The MFHP is normally used for common diseases such as diabetes and cancer, so new diseases would need to be added. The user can add diseases in the "other" field of the form.
Protocol Name from Source:
Personnel and Training Required
Computer with an internet browser.
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Self- or proxy-administered questionnaire
The Working Group recommends the use of the My Family Health Portrait (MFHP) because it is a reliable, valid, and widely used tool to obtain key family history information regarding the possible presence, absence, or risk of an individual to have a genetic condition.
English, Italian, Portuguese, Spanish
|Common Data Elements (CDE)||Family Health History Assessment Text||4798214||CDE Browser|
Process and Review
My Family Health Portrait (MFHP) can be obtained through: familyhistory.hhs.gov/FHH/html/index.html
Facio, F. M., Feero, W. G., Linn, A., Oden, N., Manickam, K., & Biesecker, L. G. (2010). Validation of My Family Health Portrait for six common heritable conditions. Genetics in Medicine, 12(6), 370-375.
Owens, K. M., Marvin, M. L., Gelehrter, T. D., Ruffin, M. T., 4th, & Uhlmann, W. R. (2011). Clinical use of the Surgeon General’s "My Family Health Portrait" (MFHP) tool: Opinions of future health care providers. Journal of Genetic Counseling, 20(5), 510-525.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
|PX221001050000||My Family Health Portrait (MFHP) - Were you more||Variable Mapping|
|PX221001030000||My Family Health Portrait (MFHP) - BirthDate||Variable Mapping|
|PX221001090000||My Family Health Portrait (MFHP) - Age at more||N/A|
|PX221001080000||My Family Health Portrait (MFHP) - Disease||N/A|
|PX221001110000||My Family Health Portrait (MFHP) - Ethnicity||N/A|
|PX221001120000||My Family Health Portrait (MFHP) -||N/A|
|PX221001020000||My Family Health Portrait (MFHP) - Gender||N/A|
|PX221001060000||My Family Health Portrait (MFHP) - Height||N/A|
|PX221001010000||My Family Health Portrait (MFHP) - Name||N/A|
|PX221001100000||My Family Health Portrait (MFHP) - Race||N/A|
|PX221001040000||My Family Health Portrait (MFHP) - Were you more||N/A|
|PX221001070000||My Family Health Portrait (MFHP) - Weight||N/A|
Family Health History
April 30, 2015
Method to obtain the medical history of individuals and their biological relatives.
This measure can be used to determine if an individual and their relatives are at risk of developing various genetic conditions. Family history information can be used to screen or diagnosis an individual for a certain condition, as well as to complete the assessment of the symptoms of a condition. Family history can be used in both population and clinical research studies.
My Family Health Portrait, MFHP, family history, personal history, inheritance, ancestry, ethnicity, autism, autism spectrum disorder, learning disability, intellectual disability, developmental delay, pedigree, risk assessment