Craniofacial Microsomia: Longitudinal Outcomes in Children Pre-Kindergarten (CLOCK)

NCT ID: NCT02224677

Last Updated: 2024-04-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

417 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-11-30

Study Completion Date

2019-08-31

Brief Summary

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This study is a multi-center, longitudinal cohort study of 125 infants with craniofacial microsomia (CFM) and 100 infants without craniofacial anomalies. Participants will undergo a series of evaluations between 0-3 years of age to comprehensively evaluate the developmental status of infants and toddlers with CFM. This research design will also explore specific pathways by which CFM may lead to certain outcomes. Specifically, the study explores (1) the longitudinal relations between facial asymmetry and emotion-related facial movements and socialization; and (2) associations among ear malformations, hearing and speech deficits and cognitive outcomes. Results of this research will ultimately lead to future investigations that assess new interventions and corresponding changes in current standards of care for children with CFM.

Detailed Description

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Conditions

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Craniofacial Microsomia Hemifacial Microsomia Oculo-Auriculo-Vertebral-Syndrome Goldenhar Syndrome Microtia

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

PROSPECTIVE

Study Groups

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Children with Craniofacial Microsomia

125 children with craniofacial microsomia will be asked to come in for two study visits - when they are about 12 months old and again when they are about 36 months old. Procedures for children at the first visit include: assessment of development, video, photographs, and a hearing evaluation. Procedures for the final study visit include: assessment of development, photographs (2D \& 3D), video, saliva sample, hearing evaluation, speech assessment.

No interventions assigned to this group

Children without Craniofacial Microsomia

Please note: we are not recruiting this group through ClinicalTrials.gov 100 children without craniofacial microsomia will be asked to come in for two study visits - when they are about 12 months old and again when they are about 36 months old. Procedures for the first visit include: assessment of development, video, and photographs. Procedures for the final study visit include: assessment of development, photographs (2D \& 3D), video, and speech assessment.

No interventions assigned to this group

Parents of Children with Craniofacial Microsomia

125-250 parents of children with craniofacial microsomia will be asked to complete three visits - when their child is about 12 months old, 24 months old, and 36 months old. Parents will be asked to complete an interview at the first visit. The second visit consists of a telephone interview where parents will be asked about their child's hearing and health history. At the final study visit, parents will be asked to complete more questionnaires, have their picture taken, and donate saliva.

No interventions assigned to this group

Parents of Children without Craniofacial Microsomia

Please note: we are not recruiting this group through ClinicalTrials.gov 100 parents of children without craniofacial microsomia will be asked to complete three visits - when their child is about 12 months old, 24 months old, and 36 months old. Parents will be asked to complete an interview at the first visit. The second visit consists of a telephone interview where parents will be asked about their child's hearing and health history. At the final study visit, parents will be asked to complete questionnaires and an interview.

No interventions assigned to this group

Teacher/Day Care Provider

When the children participants are around 36 months old, we will ask parents for permission to contact their child's teacher/day care provider. We would like the teacher/day care provider to fill out a questionnaire.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

Children with Craniofacial Microsomia:

1. Male or female infant participant is between 12 months and 24 months of age, or corrected age (for some infants born prior to their due date).
2. Infant participant has diagnosis of at least one of the following conditions:

* Microtia
* Anotia
* Facial asymmetry AND Preauricular tag(s)
* Facial asymmetry AND Facial tag(s)
* Facial asymmetry AND Epibulbar dermoid
* Facial asymmetry AND Macrostomia (i.e., lateral cleft)
* Preauricular tag AND Epibulbar dermoid
* Preauricular tag AND Macrostomia
* Facial tag AND Epibulbar dermoid
* Macrostomia AND Epibulbar dermoid
3. Infant participant has been diagnosed by a regional craniofacial team.
4. Legal guardian will provide written parental permission and informed consent prior to participation in study.
5. Legal guardian is willing to comply with all study procedures and be available for the duration of the study through Time 3.

Parents of Children with Craniofacial Microsomia:

* able to provide written consent for study participation,
* willing to comply with all study procedures and
* interested in participating in the entire study through Time 3.

Exclusion Criteria

Children with Craniofacial Microsomia:

1. Subject is diagnosed with a known syndrome that involves microtia and/or underdevelopment of the jaw (Townes-Brocks, Treacher Collins, branchiootorenal, Nager, or Miller syndromes).
2. Subject has abnormal chromosome studies (karyotype)
3. Subject has a major medical or neurological condition that prevents participation in the study (e.g., cancer, cerebral palsy) at time of recruitment
4. Subject was born before 34 weeks estimated gestational age
5. Anything that would place the subject at increased risk or preclude the subject's full compliance with or completion of the study.
6. Sibling already participating in the CLOCK study
7. Subject's consenting parent does not speak English or Spanish

Parents of Children with Craniofacial Microsomia

1. Anything that would preclude the subject's full compliance with or completion of the study.
2. Subject does not speak English or Spanish
Minimum Eligible Age

12 Months

Maximum Eligible Age

24 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute of Dental and Craniofacial Research (NIDCR)

NIH

Sponsor Role collaborator

Children's Hospital Los Angeles

OTHER

Sponsor Role collaborator

Children's Hospital of Philadelphia

OTHER

Sponsor Role collaborator

University of North Carolina

OTHER

Sponsor Role collaborator

Northwestern University

OTHER

Sponsor Role collaborator

University of Illinois at Chicago

OTHER

Sponsor Role collaborator

University of Washington

OTHER

Sponsor Role collaborator

University of Pittsburgh

OTHER

Sponsor Role collaborator

New York University

OTHER

Sponsor Role collaborator

Seattle Children's Hospital

OTHER

Sponsor Role lead

Responsible Party

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Carrie Heike

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Carrie L Heike, MD, MS

Role: PRINCIPAL_INVESTIGATOR

Seattle Children's Hospital

Matthew L Speltz, PhD

Role: PRINCIPAL_INVESTIGATOR

Seattle Children's Hospital

Locations

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Children's Hospital Los Angeles

Los Angeles, California, United States

Site Status

University of Illinois at Chicago

Chicago, Illinois, United States

Site Status

University of North Carolina

Chapel Hill, North Carolina, United States

Site Status

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

Countries

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United States

Other Identifiers

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R01DE022438-01

Identifier Type: NIH

Identifier Source: secondary_id

View Link

NIDCR: 13-002-E

Identifier Type: -

Identifier Source: org_study_id

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