Trial Outcomes & Findings for Enabling Personalized Medicine Through Exome Sequencing in the U.S. Air Force (NCT NCT03276637)

NCT ID: NCT03276637

Last Updated: 2024-10-02

Results Overview

Assessed using a novel measure of perceptions about use of genetic information for military career duty assignment decisions on a 1-5 scale, where higher scores indicate more positive attitudes.

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

105 participants

Primary outcome timeframe

Baseline and 6 weeks post disclosure of genomic sequencing results (approx. 43 weeks after baseline)

Results posted on

2024-10-02

Participant Flow

Participant milestones

Participant milestones
Measure
Healthy Active-Duty Airmen Cohort
Whole exome sequencing (WES) will be performed on 75 ostensibly healthy, active-duty Airmen (patient-participants) who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving WES. Military healthcare providers who have received brief genomics training will return results to the patient-participants and the WES reports will be permanently integrated into their electronic medical record. Whole exome sequencing: Whole exome sequencing at 125x coverage (i.e., at least 125 sequencing reads covering each position within the exome region of interest) performed at the Laboratory of Molecular Medicine's Clinical Laboratory Improvement Amendments (CLIA) certified laboratory on 75 enrolled individuals
Healthcare Provider Cohort
The Healthcare providers who provide medical care in military Primary Care, Internal Medicine and/or Family Practice settings and enroll participants. Military healthcare providers have received a brief genomics training and will return results to the patient-participants
Overall Study
STARTED
93
12
Overall Study
Airmen Pre Survey
93
0
Overall Study
Underwent Sequencing
75
0
Overall Study
Airmen Post Survey
69
0
Overall Study
HCP Pre Survey
0
12
Overall Study
HCP Post Survey
0
12
Overall Study
COMPLETED
69
12
Overall Study
NOT COMPLETED
24
0

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Enabling Personalized Medicine Through Exome Sequencing in the U.S. Air Force

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Healthy Active-Duty Airmen Cohort
n=93 Participants
Whole exome sequencing (WES) will be performed on 75 ostensibly healthy, active-duty Airmen (patient-participants) who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving WES. Military healthcare providers who have received brief genomics training will return results to the patient-participants and the WES reports will be permanently integrated into their electronic medical record. Whole exome sequencing: Whole exome sequencing at 125x coverage (i.e., at least 125 sequencing reads covering each position within the exome region of interest) performed at the Laboratory of Molecular Medicine's CLIA certified laboratory on 75 enrolled individuals
Healthcare Provider Cohort
n=12 Participants
The Healthcare providers who provide medical care in military Primary Care, Internal Medicine and/or Family Practice settings and enroll participants. Military healthcare providers have received a brief genomics training and will return results to the patient-participants
Total
n=105 Participants
Total of all reporting groups
Age, Categorical
<=18 years
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
Age, Categorical
Between 18 and 65 years
93 Participants
n=99 Participants
12 Participants
n=107 Participants
105 Participants
n=206 Participants
Age, Categorical
>=65 years
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
Age, Continuous
33.75 years
STANDARD_DEVIATION 8.3 • n=99 Participants
39 years
STANDARD_DEVIATION 9.25 • n=107 Participants
34.2 years
STANDARD_DEVIATION 8.4 • n=206 Participants
Sex: Female, Male
Female
45 Participants
n=99 Participants
4 Participants
n=107 Participants
49 Participants
n=206 Participants
Sex: Female, Male
Male
48 Participants
n=99 Participants
8 Participants
n=107 Participants
56 Participants
n=206 Participants
Race/Ethnicity, Customized
Race/Ethnicity · Hispanic or Lation
17 Participants
n=99 Participants
0 Participants
n=107 Participants
17 Participants
n=206 Participants
Race/Ethnicity, Customized
Race/Ethnicity · Non-Hispanic White
61 Participants
n=99 Participants
6 Participants
n=107 Participants
67 Participants
n=206 Participants
Race/Ethnicity, Customized
Race/Ethnicity · Non-Hispanic Other
13 Participants
n=99 Participants
6 Participants
n=107 Participants
19 Participants
n=206 Participants
Race/Ethnicity, Customized
Race/Ethnicity · Prefer Not to Answer
2 Participants
n=99 Participants
0 Participants
n=107 Participants
2 Participants
n=206 Participants
Region of Enrollment
United States
93 participants
n=99 Participants
12 participants
n=107 Participants
105 participants
n=206 Participants

PRIMARY outcome

Timeframe: Baseline and 6 weeks post disclosure of genomic sequencing results (approx. 43 weeks after baseline)

Population: 69 participants completed follow-up survey

Assessed using a novel measure of perceptions about use of genetic information for military career duty assignment decisions on a 1-5 scale, where higher scores indicate more positive attitudes.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=75 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Active-duty Airmen's Perceptions About Military Use of Genomic Information to Make Career Decisions
Baseline
2.62 score on a scale
Standard Deviation 0.75
Active-duty Airmen's Perceptions About Military Use of Genomic Information to Make Career Decisions
6-weeks post-disclosure
2.66 score on a scale
Standard Deviation 0.91

PRIMARY outcome

Timeframe: Results disclosure (within 1 month of sequencing completion)

Analysis of whole exome sequencing results identified the number of participants with genomic findings, including monogenic disease risk, carrier status, and risk allele presence.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=75 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Genomic Sequencing Findings
Risk Allele findings · Present
37 Participants
Genomic Sequencing Findings
Monogenic disease findings · Present
11 Participants
Genomic Sequencing Findings
Monogenic disease findings · Not Present
64 Participants
Genomic Sequencing Findings
Carrier status findings · Present
65 Participants
Genomic Sequencing Findings
Carrier status findings · Not Present
10 Participants
Genomic Sequencing Findings
Risk Allele findings · Not Present
38 Participants

PRIMARY outcome

Timeframe: 6 weeks post-disclosure (approx. 43 weeks after baseline)

Population: 69 participants completed follow-up survey and several participants selected more than one answer for 83 total responses.

Participants' health care utilization was assessed through a combination of medical record reviews and novel and adapted measures from the Behavioral Risk Factor Surveillance System (BRFSS). Survey self-report data were compared to services and procedures indicated on medical record review.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=83 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Active-duty Airmen Reported Health Care Utilization Related to Study Results
Change in diet
9 participants
Active-duty Airmen Reported Health Care Utilization Related to Study Results
Change in exercise
7 participants
Active-duty Airmen Reported Health Care Utilization Related to Study Results
Change in use of vitamin supplements
5 participants
Active-duty Airmen Reported Health Care Utilization Related to Study Results
Change in use of medication
5 participants
Active-duty Airmen Reported Health Care Utilization Related to Study Results
Other change
1 participants
Active-duty Airmen Reported Health Care Utilization Related to Study Results
No change
56 participants

PRIMARY outcome

Timeframe: Baseline (pre and post) and Follow-up (follow-up administered approx. 53 weeks after baseline)

Population: Healthcare providers who completed the pre, post and follow-up surveys

Military healthcare provider-participants' genomic literacy were measured with a 14-item measure adapted from the ClinSeq Study (Kaphingst K.A. et al. 2012) administered at baseline, before (pre) and immediately after (post) an education session, and at Follow-up near the end of the study. Items are marked as correct (1) or incorrect (0) and summed for a total scale range of 0 to 14, with higher scores indicating higher genomic literacy.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=12 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Military Healthcare Providers' Genomic Literacy
Pre test
9.92 score on a scale
Standard Deviation 1.38
Military Healthcare Providers' Genomic Literacy
Post test
11.50 score on a scale
Standard Deviation 1.45
Military Healthcare Providers' Genomic Literacy
Follow-up
10.75 score on a scale
Standard Deviation 2.25

SECONDARY outcome

Timeframe: Baseline and 6-weeks post-disclosure (approx.. 43 weeks after baseline)

Population: 69 surveys completed at follow-up

Adapted measures assessed participants' attitudes toward genetic information, trust of physicians and the military regarding use of genetic information. (Hall et al. 2006). Scores are summed, with higher scores on a 4-20 scale representing greater trust. A novel survey item at baseline and 6-weeks post-disclosure asked participants to rate the usefulness of whole genome sequencing results for managing health now on a 1-10 scale.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=75 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Active-duty Airmen Attitudes and Perceived Utility Toward Genomic Sequencing
Trust at follow-up
14.10 score on a scale
Standard Deviation 2.25
Active-duty Airmen Attitudes and Perceived Utility Toward Genomic Sequencing
Usefulness - follow-up
7.30 score on a scale
Standard Deviation 2.11
Active-duty Airmen Attitudes and Perceived Utility Toward Genomic Sequencing
Trust at baseline
14.31 score on a scale
Standard Deviation 2.47
Active-duty Airmen Attitudes and Perceived Utility Toward Genomic Sequencing
Usefulness - Baseline
7.76 score on a scale
Standard Deviation 2.11

SECONDARY outcome

Timeframe: Baseline and 6-weeks post-disclosure (approx.. 43 weeks after baseline)

Population: 69 surveys were completed at follow-up

Assessed using a validated measure of subjective perceptions about health status. (Latham 2013, DeSalvo 2006). Responses are on a 1 - 5 scale, where higher scores indicate more positive responses.

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=75 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Active-duty Airmen's Health Perceptions
Health perceptions- baseline
3.95 score on a scale
Standard Deviation 0.81
Active-duty Airmen's Health Perceptions
Health perceptions - follow-up
3.86 score on a scale
Standard Deviation 0.76

SECONDARY outcome

Timeframe: Baseline (pre and post) and Follow-up (follow-up administered approx. 53 weeks after baseline)

Population: Healthcare providers who completed the pre, post and follow-up surveys

Assessed through a scale developed for the Multiplex initiative to measure provider genomic confidence (Gray SW et al 2014). Scores are summed with higher scores on a 5-20 scale indicating greater confidence in military healthcare provider-participants' abilities to understand genetic information

Outcome measures

Outcome measures
Measure
Healthy Active-Duty Airmen Cohort
n=12 Participants
Ostensibly healthy, active-duty Airmen who receive medical care in military Primary Care, Internal Medicine and/or Family Practice settings who in their baseline survey expressed interest in receiving exome sequencing (ES) undergo ES and have the results returned to them.
Military Healthcare Providers' Confidence With Genomic Data
Pre-Test
7.25 score on a scale
Standard Deviation 2.05
Military Healthcare Providers' Confidence With Genomic Data
Post-Test
13.00 score on a scale
Standard Deviation 1.41
Military Healthcare Providers' Confidence With Genomic Data
Follow-up
12.33 score on a scale
Standard Deviation 2.29

Adverse Events

Healthy Active-Duty Airmen Cohort

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Healthcare Provider Cohort

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Jill Robinson

Baylor College of Medicine

Phone: 7137985848

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place