Trial Outcomes & Findings for Supporting the Health and Well-being of Children With Intellectual and Developmental Disability During COVID-19 Pandemic (NCT NCT04565509)

NCT ID: NCT04565509

Last Updated: 2026-02-23

Results Overview

Assuming the binomial distribution for each primary outcome, generalized estimating equation (GEE) models with logit link function were utilized to investigate the primary outcome changes across the weeks. The denominators for the enrollment and test rate per school were the total number of staff and students; and the total number of consented participants for a specific week, respectively. For the weeks after randomization, the GEE model included the indicator of week, group indicator, and the interaction term between week and group indicator. P-values of the interaction term from type-3 test were used to test the difference between 2 groups across the weeks. At Kennedy, GEE models were conducted separately using participants with non-missing data and participants with missing data to assess the impact of missing data. The reported values reflect the percentage of participants enrolled per week.

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

1143 participants

Primary outcome timeframe

22 months

Results posted on

2026-02-23

Participant Flow

All students and staff in the schools were eligible.

Focus Groups and Fuzzy Cognitive Mapping only completed during Phase 1. SCD = Special School District. KKI = Kennedy Krieger Institute. FCM = Fuzzy Cognitive Mapping.

Unit of analysis: Schools

Participant milestones

Participant milestones
Measure
SSD: Standard Messaging - Enhanced Messaging
In phase 1, all received standard messaging. In phase 2, three schools were randomized to a messaging strategy that was developed from focus groups that targeted to address specific concerns of the different communities.
KKI: Standard Messaging - Standard Messaging
In phase 1, all schools received standard messaging. In Phase 2, two school were randomized to receive standard messaging.
SSD: Standard Messaging-Standard Messaging
In phase 1, all schools received standard messaging. In Phase 2, three school were randomized to receive standard messaging.
KKI: Standard Messaging - Enhanced Messaging
In phase 1, all received standard messaging. In phase 2, two schools were randomized to a messaging strategy that was developed from focus groups that targeted to address specific concerns of the different communities.
Focus Groups
Focus group were completed in Phase 1 to develop enhanced messaging. Focus group participants were not required to be enrolled in testing.
Fuzzy Cognitive Mapping
FCMs were completed to assess the facilitators and barriers to testing. FCM participants were not required to be enrolled testing. Participants in the FCM only participated in Phase 1.
Phase 1
STARTED
352 3
133 2
284 3
194 2
86 0
94 0
Phase 1
COMPLETED
352 3
133 2
284 3
194 2
86 0
94 0
Phase 1
NOT COMPLETED
0 0
0 0
0 0
0 0
0 0
0 0
Phase 2
STARTED
352 3
133 2
284 3
194 2
0 0
0 0
Phase 2
COMPLETED
352 2
133 2
284 3
194 2
0 0
0 0
Phase 2
NOT COMPLETED
0 1
0 0
0 0
0 0
0 0
0 0

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Missing data

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
SSD: Standard Messaging - Standard Messaging
n=284 Participants
In phase 1, all schools received standard messaging. In phase 2, three schools were randomized to standard messaging.
SSD: Standard Messaging - Enhanced Messaging
n=352 Participants
In phase 1, all schools received standard messaging. In phase 2, three schools were randomized to a messaging strategy that was developed from focus groups that were targeted to address specific concerns of the different communities.
KKI: Standard Messaging-Standard Messaging
n=133 Participants
In phase1, all schools received standard messaging. In phase 2 two schools were randomized to standard messaging.
KKI: Standard Messaging - Enhanced Messaging
n=194 Participants
In phase 1, all schools received standard messaging. In phase 2, two schools were randomized to a messaging strategy that was developed from focus groups that were targeted to address specific concerns of the different communities.
Focus Group Participants
n=86 Participants
Parents/caregivers and school staff in participating schools.
Fuzzy Cognitive Mapping Participants
n=94 Participants
Parents/caregivers of a child (children) with IDD in Missouri and Maryland.
Total
n=1143 Participants
Total of all reporting groups
Sex: Female, Male
Male
68 Participants
n=283 Participants • Missing data
96 Participants
n=349 Participants • Missing data
40 Participants
n=131 Participants • Missing data
41 Participants
n=188 Participants • Missing data
4 Participants
n=69 Participants • Missing data
9 Participants
n=93 Participants • Missing data
258 Participants
n=1113 Participants • Missing data
Age, Continuous
38 years
n=284 Participants • median age was calculated for the COVID-19 testing participants only. Most participants were adult staff, students were also included in this calculation
41 years
n=352 Participants • median age was calculated for the COVID-19 testing participants only. Most participants were adult staff, students were also included in this calculation
35 years
n=133 Participants • median age was calculated for the COVID-19 testing participants only. Most participants were adult staff, students were also included in this calculation
30 years
n=194 Participants • median age was calculated for the COVID-19 testing participants only. Most participants were adult staff, students were also included in this calculation
35 years
n=963 Participants • median age was calculated for the COVID-19 testing participants only. Most participants were adult staff, students were also included in this calculation
Age, Customized
25 to 34 years of age
16 Participants
n=86 Participants • These age categories were calculated for focus groups only
16 Participants
n=86 Participants • These age categories were calculated for focus groups only
Age, Customized
35 to 44 years of age
13 Participants
n=86 Participants • These age categories were calculated for focus groups only
13 Participants
n=86 Participants • These age categories were calculated for focus groups only
Age, Customized
45 to 54 years of age
26 Participants
n=86 Participants • These age categories were calculated for focus groups only
26 Participants
n=86 Participants • These age categories were calculated for focus groups only
Age, Customized
>/= 55 years of age
12 Participants
n=86 Participants • These age categories were calculated for focus groups only
12 Participants
n=86 Participants • These age categories were calculated for focus groups only
Age, Customized
Unknown
19 Participants
n=86 Participants • These age categories were calculated for focus groups only
19 Participants
n=86 Participants • These age categories were calculated for focus groups only
Age, Customized
25 to 30 years of age
3 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
3 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Age, Customized
30 to 39 years of age
21 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
21 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Age, Customized
40 to 49 years of age
43 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
43 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Age, Customized
50 to 59 years of age
19 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
19 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Age, Customized
60 to 64 years of age
6 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
6 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Age, Customized
other or missing
2 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
2 Participants
n=94 Participants • These age categories were calculated for Fuzzy Cognitive Mapping (FCM) group only
Sex: Female, Male
Female
215 Participants
n=283 Participants • Missing data
253 Participants
n=349 Participants • Missing data
91 Participants
n=131 Participants • Missing data
147 Participants
n=188 Participants • Missing data
65 Participants
n=69 Participants • Missing data
84 Participants
n=93 Participants • Missing data
855 Participants
n=1113 Participants • Missing data
Ethnicity (NIH/OMB)
Hispanic or Latino
11 Participants
n=284 Participants
12 Participants
n=352 Participants
5 Participants
n=133 Participants
9 Participants
n=194 Participants
1 Participants
n=86 Participants
2 Participants
n=94 Participants
40 Participants
n=1143 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
255 Participants
n=284 Participants
316 Participants
n=352 Participants
116 Participants
n=133 Participants
167 Participants
n=194 Participants
66 Participants
n=86 Participants
90 Participants
n=94 Participants
1010 Participants
n=1143 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
18 Participants
n=284 Participants
24 Participants
n=352 Participants
12 Participants
n=133 Participants
18 Participants
n=194 Participants
19 Participants
n=86 Participants
2 Participants
n=94 Participants
93 Participants
n=1143 Participants
Race/Ethnicity, Customized
White
203 Participants
n=284 Participants
244 Participants
n=352 Participants
86 Participants
n=133 Participants
120 Participants
n=194 Participants
59 Participants
n=86 Participants
70 Participants
n=94 Participants
782 Participants
n=1143 Participants
Race/Ethnicity, Customized
Black/African American
62 Participants
n=284 Participants
83 Participants
n=352 Participants
37 Participants
n=133 Participants
55 Participants
n=194 Participants
8 Participants
n=86 Participants
15 Participants
n=94 Participants
260 Participants
n=1143 Participants
Race/Ethnicity, Customized
Other / Mixed
10 Participants
n=284 Participants
15 Participants
n=352 Participants
8 Participants
n=133 Participants
18 Participants
n=194 Participants
2 Participants
n=86 Participants
9 Participants
n=94 Participants
62 Participants
n=1143 Participants
Race/Ethnicity, Customized
Not Reported
9 Participants
n=284 Participants
10 Participants
n=352 Participants
2 Participants
n=133 Participants
1 Participants
n=194 Participants
17 Participants
n=86 Participants
0 Participants
n=94 Participants
39 Participants
n=1143 Participants
Region of Enrollment
United States
284 participants
n=284 Participants
352 participants
n=352 Participants
133 participants
n=133 Participants
194 participants
n=194 Participants
86 participants
n=86 Participants
94 participants
n=94 Participants
1143 participants
n=1143 Participants

PRIMARY outcome

Timeframe: 22 months

Population: Comparison of enrollment rate between standard and enhanced messages.

Assuming the binomial distribution for each primary outcome, generalized estimating equation (GEE) models with logit link function were utilized to investigate the primary outcome changes across the weeks. The denominators for the enrollment and test rate per school were the total number of staff and students; and the total number of consented participants for a specific week, respectively. For the weeks after randomization, the GEE model included the indicator of week, group indicator, and the interaction term between week and group indicator. P-values of the interaction term from type-3 test were used to test the difference between 2 groups across the weeks. At Kennedy, GEE models were conducted separately using participants with non-missing data and participants with missing data to assess the impact of missing data. The reported values reflect the percentage of participants enrolled per week.

Outcome measures

Outcome measures
Measure
Special School District
n=636 Participants
Special School District in St. Louis, MO
Teachers/Staff
Teachers/staff employed at Special School District
Enrollment Into Weekly Testing by Each Participant - Special School District
Standard messaging
0.47 % of participants enrolled per week
Interval 0.46 to 0.47
Enrollment Into Weekly Testing by Each Participant - Special School District
Enhanced messaging
0.49 % of participants enrolled per week
Interval 0.49 to 0.5

PRIMARY outcome

Timeframe: 22 months

Population: All testing participants

Assuming the binomial distribution for each primary outcome, generalized estimating equation (GEE) models with logit link function were utilized to investigate the primary outcome changes across the weeks. The denominators for the enrollment and test rate per school were the total number of staff and students; and the total number of consented participants for a specific week, respectively. For the weeks after randomization, the GEE model included the indicator of week, group indicator, and the interaction term between week and group indicator. P-values of the interaction term from type-3 test were used to test the difference between 2 groups across the weeks. At Kennedy, GEE models were conducted separately using participants with non-missing data and participants with missing data to assess the impact of missing data. The outcome measure reflects the percentage of participants tested per week.

Outcome measures

Outcome measures
Measure
Special School District
n=636 Participants
Special School District in St. Louis, MO
Teachers/Staff
Teachers/staff employed at Special School District
Overall Testing Rate - Special School District
Standard messaging
0.57 % of participants tested per week
Interval 0.56 to 0.58
Overall Testing Rate - Special School District
Enhanced messaging
0.46 % of participants tested per week
Interval 0.45 to 0.46

PRIMARY outcome

Timeframe: 22 months

Population: Comparison of enrollment rate between standard and enhanced messages.

Assuming the binomial distribution for each primary outcome, generalized estimating equation (GEE) models with logit link function were utilized to investigate the primary outcome changes across the weeks. The denominators for the enrollment and test rate per school were the total number of staff and students; and the total number of consented participants for a specific week, respectively. For the weeks after randomization, the GEE model included the indicator of week, group indicator, and the interaction term between week and group indicator. P-values of the interaction term from type-3 test were used to test the difference between 2 groups across the weeks. At Kennedy, GEE models were conducted separately using participants with non-missing data and participants with missing data to assess the impact of missing data. The outcome measure reflects the percentage of participants enrolled per week.

Outcome measures

Outcome measures
Measure
Special School District
n=327 Participants
Special School District in St. Louis, MO
Teachers/Staff
Teachers/staff employed at Special School District
Enrollment Into Weekly Testing by Each Participant - Kennedy Krieger Institute
Standard messaging
0.25 % of participants enrolled per week
Interval 0.25 to 0.26
Enrollment Into Weekly Testing by Each Participant - Kennedy Krieger Institute
Enhanced messaging
0.36 % of participants enrolled per week
Interval 0.35 to 0.37

PRIMARY outcome

Timeframe: 22 months

Population: All testing participants

Assuming the binomial distribution for each primary outcome, generalized estimating equation (GEE) models with logit link function were utilized to investigate the primary outcome changes across the weeks. The denominators for the enrollment and test rate per school were the total number of staff and students; and the total number of consented participants for a specific week, respectively. For the weeks after randomization, the GEE model included the indicator of week, group indicator, and the interaction term between week and group indicator. P-values of the interaction term from type-3 test were used to test the difference between 2 groups across the weeks. At Kennedy, GEE models were conducted separately using participants with non-missing data and participants with missing data to assess the impact of missing data. The outcome measure reflects the percentage of participants tested per week.

Outcome measures

Outcome measures
Measure
Special School District
n=327 Participants
Special School District in St. Louis, MO
Teachers/Staff
Teachers/staff employed at Special School District
Overall Testing Rate - Kennedy Krieger Institute
Standard messaging
0.43 % of participants tested per week
Interval 0.41 to 0.45
Overall Testing Rate - Kennedy Krieger Institute
Enhanced messaging
0.63 % of participants tested per week
Interval 0.61 to 0.64

SECONDARY outcome

Timeframe: 2 months

Population: Parents/caregivers of students enrolled in Special School District and teachers/staff employed at Special School District who participated in the focus group sessions. The presence of a theme resulting from focus groups is represented as "1" each group. Zeros represent the absence of themes.

Key themes and subthemes of participants' perceptions of returning to in-person learning

Outcome measures

Outcome measures
Measure
Special School District
n=29 Participants
Special School District in St. Louis, MO
Teachers/Staff
n=57 Participants
Teachers/staff employed at Special School District
Key Themes and Subthemes: Perceptions of Returning to In-person Learning
Feeling guilty about transmitting COVID-19 at school
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Perceptions of Returning to In-person Learning
Anxiety about transmission of COVID-19 for high-risk students
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Perceptions of Returning to In-person Learning
Level of comfort unchanged because it does not eliminate the risk of exposure
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Perceptions of Returning to In-person Learning
Benefits of in-person outweigh risks
1 Themes reported
0 Themes reported

SECONDARY outcome

Timeframe: 2 months

Population: Parents/caregivers of students enrolled in Special School District and teachers/staff employed at Special School District who participated in the focus group sessions. The presence of a theme resulting from focus groups is represented as "1" each group. Zeros represent the absence of themes.

Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing

Outcome measures

Outcome measures
Measure
Special School District
n=29 Participants
Special School District in St. Louis, MO
Teachers/Staff
n=57 Participants
Teachers/staff employed at Special School District
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Ability to adapt to child's limited ability to communicate symptoms
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Maintain consistency for student schedule
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Importance of flexibility during student testing
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Students need social stories to prepare for testing
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Parents administering test at home
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Ability to identify asymptomatic COVID-19 cases
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Ability to quickly isolate affected individuals
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Provide details about the accuracy of the saliva-based test
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Facilitators to Participation in SARS-CoV-2 Screening Testing
Desire for in-person facilitated by regular testing
1 Themes reported
0 Themes reported

SECONDARY outcome

Timeframe: 2 months

Population: Parents/caregivers of students enrolled in Special School District and teachers/staff employed at Special School District who participated in the focus group sessions. The presence of a theme resulting from focus groups is represented as "1" each group. Zeros represent the absence of themes.

Key Themes and Subthemes: Communication (messages)

Outcome measures

Outcome measures
Measure
Special School District
n=29 Participants
Special School District in St. Louis, MO
Teachers/Staff
n=57 Participants
Teachers/staff employed at Special School District
Key Themes and Subthemes: Communication (Messages)
Preferred methods of communication for receiving COVID-19 information
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Communication (Messages)
Frequent and consistent messaging
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Communication (Messages)
Concerns about frequency of COVID-19 dashboard updates
0 Themes reported
1 Themes reported
Key Themes and Subthemes: Communication (Messages)
House regularly updated COVID-19 info in 1 place
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Communication (Messages)
Communicate the testing protocol with caregivers, staff, and students
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Communication (Messages)
Provide test results quickly
0 Themes reported
1 Themes reported

SECONDARY outcome

Timeframe: 2 month

Population: Parents/caregivers of students enrolled in Special School District and teachers/staff employed at Special School District who participated in the focus group sessions. The presence of a theme resulting from focus groups is represented as "1" each group. Zeros represent the absence of themes.

Key themes and subthemes: Communication (messengers)

Outcome measures

Outcome measures
Measure
Special School District
n=29 Participants
Special School District in St. Louis, MO
Teachers/Staff
n=57 Participants
Teachers/staff employed at Special School District
Key Themes and Subthemes: Communication (Messengers)
Medical professionals were identified as trusted sources of information related to COVID-19
1 Themes reported
1 Themes reported
Key Themes and Subthemes: Communication (Messengers)
Teachers and case managers were identified as reliable messengers
1 Themes reported
0 Themes reported
Key Themes and Subthemes: Communication (Messengers)
School nurses and principals were identified as trusted sources for information related to COVID-19
1 Themes reported
1 Themes reported

SECONDARY outcome

Timeframe: up to 52 weeks

Population: This outcome measure was assessed only in the Fuzzy Cognitive Mapping group and the Facilitators and Barriers groups represent two separate interventions. Zero's Number Analyzed indicates that facilitator themes were not assessed in the "Barriers" arm and barrier themes were not assessed in the "Facilitators" arm.

Structural equation modeling (SEM) was used to confirm the results of the FCM analyses. SEM is a combination of confirmatory factor analysis (CFA) and multiple regression that identifies the relationships among latent constructs. For the purpose of the current study, SEM analyses examined the effects of facilitators and barriers related to a Successful SARS-COV-2 Test. The factor loadings in the tables can be interpreted on the following scale: 0.70+ -\> Strong 0.50 -\> Moderate 0.30 -\> Weak but acceptable

Outcome measures

Outcome measures
Measure
Special School District
n=94 Participants
Special School District in St. Louis, MO
Teachers/Staff
n=94 Participants
Teachers/staff employed at Special School District
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Preparing the Child
0.75 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Good Environment
0.25 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Incentives/motivators/reinforcers
0.43 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Poor Environment
0.58 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Poor Test Administrator
0.59 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Mode of Test (painful/invasive)
0.38 unitless
Structural Equation Modeling (SEM) for Effects of Facilitators and Barriers Related to a Successful SARS-COV-2 Test
Child Needs
0.38 unitless

SECONDARY outcome

Timeframe: up to 52 weeks

Population: This outcome measure was assessed only in the Fuzzy Cognitive Mapping group

In the one-factor model, Structural equation modeling (SEM) was used for pinpointing key items that loaded onto Successful SARS-COV-2 Test The factor loadings in the tables can be interpreted on the following scale: 0.70+ -\> Strong 0.50 -\> Moderate 0.30 -\> Weak but acceptable

Outcome measures

Outcome measures
Measure
Special School District
n=94 Participants
Special School District in St. Louis, MO
Teachers/Staff
Teachers/staff employed at Special School District
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Preparing the Child
0.31 unitless
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Good Environment
0.36 unitless
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Poor Environment
0.55 unitless
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Poor Test Administrator
0.62 unitless
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Mode of Test (painful/invasive)
0.35 unitless
Structural Equation Modeling (SEM) for Successful SARS-COV-2 Test
Child Needs
0.37 unitless

Adverse Events

SSD: Standard Messaging

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

SSD: Enhanced Messaging

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

KKI: Standard Messaging

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

KKI: Enhanced Messaging

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

Focus Group Participants

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

Fuzzy Cognitive Mapping Participants

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

Jason Newland, MD

Nationwide Children's Hospital

Phone: 614-722-3416

Results disclosure agreements

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