NCT01956773

Brief Summary

The outcome of this research will be a demonstration that family health history (FHH) risk data can be used efficiently to deliver more effective healthcare in geographically and ethnically diverse clinical care environments. Although FHH is a standard component of the medical interview its widespread adoption is hindered by three major barriers: (1) a dearth of standard collection methods; (2) the absence of health care provider access to complete FHH information; and (3) the need for clinical guidance for the interpretation and use of FHH. In addition, the time constraints of the busy provider and poor integration of FHH with paper medical records or electronic medical records (EMR) impede its widespread use. The investigators hypothesize that patient-driven and electronic collection of FHH for risk stratification will promote more informed decision-making by patients and providers, and improves adherence to risk-stratified preventive care guidelines. The study team will use an implementation sciences approach to integrate an innovative FHH system that collects FHH from patients. Intermountain Healthcare will provide the information technology expertise with EMR design to develop an innovative solution to a storage model standard for FHH data as well as a centralized standards-compliant open clinical decision support (OpenCDS) rule development architecture to analyze FHH and to generate evidence-based, individualized, disease risk, preventive care recommendations for both patients and providers.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
2,620

participants targeted

Target at P75+ for not_applicable diabetes

Timeline
Completed

Started Apr 2014

Longer than P75 for not_applicable diabetes

Geographic Reach
1 country

5 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

September 30, 2013

Completed
8 days until next milestone

First Posted

Study publicly available on registry

October 8, 2013

Completed
6 months until next milestone

Study Start

First participant enrolled

April 11, 2014

Completed
3.6 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 31, 2017

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 31, 2017

Completed
1.9 years until next milestone

Results Posted

Study results publicly available

October 8, 2019

Completed
Last Updated

August 2, 2023

Status Verified

July 1, 2023

Enrollment Period

3.6 years

First QC Date

September 30, 2013

Results QC Date

February 18, 2019

Last Update Submit

July 31, 2023

Conditions

Keywords

family health historypreventiongenetic riskclinical decision support

Outcome Measures

Primary Outcomes (1)

  • Number of Participants With Uptake of Genetic Counseling for Those at Risk of Hereditary Conditions at 1 Year

    How many patients identified as meeting criteria for genetic counseling, how many providers ordered genetic counseling, and how many patients adhere to the provider recommendation at 1 year.

    Baseline, 3 and 12 months

Secondary Outcomes (6)

  • Number of Participants Reporting Satisfaction When Using the MeTree Tool

    3 months

  • Number of Participants Reporting Comfort When Using the MeTree Tool

    3 months

  • Number of Participants Reporting Anxiety When Using the MeTree Tool

    3 months

  • Number of Participants Reporting Preparedness When Using the MeTree Tool

    3 months

  • Number of Physicians Who Gave Their Perceptions of Satisfaction and the MeTree Tool's Impact on Work Load

    3 months

  • +1 more secondary outcomes

Study Arms (2)

MeTree - Patient

EXPERIMENTAL

MeTree collects family health history data and generates risk scores and specific risk-based recommendation for preventive care to patients as clinical decision support.

Other: MeTree

MeTree - Provider

EXPERIMENTAL

MeTree collects family health history data and generates risk scores and specific risk-based recommendation for preventive care to providers as clinical decision support.

Other: MeTree

Interventions

MeTreeOTHER

Software program collecting family health history and generating clinical decision support for risk-based preventive care

MeTree - PatientMeTree - Provider

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Adults 18 years of age
  • Scheduled for a well visit appointment in selected clinics
  • English and Spanish speaking
  • Able to provide informed consent

You may not qualify if:

  • None

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (5)

David Grant Medical Center

Fairfield, California, 94535, United States

Location

Essentia Institute of Rural Health

Duluth, Minnesota, 55805, United States

Location

Duke University Medical Center

Durham, North Carolina, 27710, United States

Location

University of North Texas Health Science Center

Fort Worth, Texas, 76107, United States

Location

Medical College of Wisconsin

Milwaukee, Wisconsin, 53226, United States

Location

Related Publications (4)

  • Wu RR, Myers RA, Neuner J, McCarty C, Haller IV, Harry M, Fulda KG, Dimmock D, Rakhra-Burris T, Buchanan A, Ginsburg GS, Orlando LA. Implementation-effectiveness trial of systematic family health history based risk assessment and impact on clinical disease prevention and surveillance activities. BMC Health Serv Res. 2022 Dec 6;22(1):1486. doi: 10.1186/s12913-022-08879-2.

  • Orlando LA, Wu RR, Myers RA, Neuner J, McCarty C, Haller IV, Harry M, Fulda KG, Dimmock D, Rakhra-Burris T, Buchanan A, Ginsburg GS. At the intersection of precision medicine and population health: an implementation-effectiveness study of family health history based systematic risk assessment in primary care. BMC Health Serv Res. 2020 Nov 7;20(1):1015. doi: 10.1186/s12913-020-05868-1.

  • Wu RR, Myers RA, Buchanan AH, Dimmock D, Fulda KG, Haller IV, Haga SB, Harry ML, McCarty C, Neuner J, Rakhra-Burris T, Sperber N, Voils CI, Ginsburg GS, Orlando LA. Effect of Sociodemographic Factors on Uptake of a Patient-Facing Information Technology Family Health History Risk Assessment Platform. Appl Clin Inform. 2019 Mar;10(2):180-188. doi: 10.1055/s-0039-1679926. Epub 2019 Mar 13.

  • Wu RR, Myers RA, McCarty CA, Dimmock D, Farrell M, Cross D, Chinevere TD, Ginsburg GS, Orlando LA; Family Health History Network. Protocol for the "Implementation, adoption, and utility of family history in diverse care settings" study. Implement Sci. 2015 Nov 24;10:163. doi: 10.1186/s13012-015-0352-8.

MeSH Terms

Conditions

Diabetes MellitusHeart DiseasesNeoplasms

Condition Hierarchy (Ancestors)

Glucose Metabolism DisordersMetabolic DiseasesNutritional and Metabolic DiseasesEndocrine System DiseasesCardiovascular Diseases

Limitations and Caveats

12 mo survey ended early w/ approved by Duke IRB. Sufficient data obtained to perform the scientific analysis; the overall status of the study is still active, not recruiting. Participant contact completed.

Results Point of Contact

Title
Dr. Lori A. Orlando, Director Program in Precision Medicine
Organization
Duke University Medical Center

Study Officials

  • Geoffrey S Ginsburg, MD PHD

    Duke University, Institute for Genome Science and Policy

    PRINCIPAL INVESTIGATOR
  • Lori Orlando, MD

    Duke University, Department of Medicine

    PRINCIPAL INVESTIGATOR

Publication Agreements

PI is Sponsor Employee
No
Restrictive Agreement
No

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NON RANDOMIZED
Masking
NONE
Purpose
HEALTH SERVICES RESEARCH
Intervention Model
SINGLE GROUP
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 30, 2013

First Posted

October 8, 2013

Study Start

April 11, 2014

Primary Completion

October 31, 2017

Study Completion

October 31, 2017

Last Updated

August 2, 2023

Results First Posted

October 8, 2019

Record last verified: 2023-07

Locations