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Protocol - Family Health History

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Description:

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.

Protocol:

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:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

Computer with an internet browser.

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
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

Life Stage:

Adult

Participants:

Adults

Specific Instructions:

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.

Selection Rationale

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.

Language

English, Italian, Portuguese, Spanish

Standards
StandardNameIDSource
Common Data Elements (CDE) Family Health History Assessment Text 4798214 CDE Browser
Derived Variables

None

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

My Family Health Portrait (MFHP) can be obtained through: familyhistory.hhs.gov/FHH/html/index.html

General References

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.

Protocol ID:

221001

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX221001_MFHP_Adopted PX221001050000 My Family Health Portrait (MFHP) - Were you adopted? 4 N/A
PX221001_MFHP_BirthDate PX221001030000 My Family Health Portrait (MFHP) - BirthDate 4 N/A
PX221001_MFHP_Diagnosis_Age PX221001090000 My Family Health Portrait (MFHP) - Age at Diagnosis 4 N/A
PX221001_MFHP_Disease PX221001080000 My Family Health Portrait (MFHP) - Disease 4 N/A
PX221001_MFHP_Ethnicity PX221001110000 My Family Health Portrait (MFHP) - Ethnicity 4 N/A
PX221001_MFHP_Family_Member PX221001120000 My Family Health Portrait (MFHP) - 4 N/A
PX221001_MFHP_Gender PX221001020000 My Family Health Portrait (MFHP) - Gender 4 N/A
PX221001_MFHP_Height PX221001060000 My Family Health Portrait (MFHP) - Height 4 N/A
PX221001_MFHP_Name PX221001010000 My Family Health Portrait (MFHP) - Name 4 N/A
PX221001_MFHP_Race PX221001100000 My Family Health Portrait (MFHP) - Race 4 N/A
PX221001_MFHP_Twin PX221001040000 My Family Health Portrait (MFHP) - Were you born a twin? 4 N/A
PX221001_MFHP_Weight PX221001070000 My Family Health Portrait (MFHP) - Weight 4 N/A
Research Domain Information
Measure Name:

Family Health History

Release Date:

April 30, 2015

Definition

Method to obtain the medical history of individuals and their biological relatives.

Purpose

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.

Keywords

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