Application of a Systematic Developmental Assessment to a Novel Population: Infants With Rare Genetic Disorders
NCT ID: NCT03967743
Last Updated: 2024-06-21
Study Results
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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RECRUITING
150 participants
OBSERVATIONAL
2019-08-26
2025-12-01
Brief Summary
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Detailed Description
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For infants with rare genetic disorders, the aims are as follows:
Aim 1: Characterize physical and psychosocial development using standardized longitudinal assessments.
Aim 2: Identify developmental service needs, prescription, and utilization.
Aim 3: Assess parental stress and health-related quality of life.
Conditions
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Study Design
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CASE_ONLY
PROSPECTIVE
Study Groups
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Infants with rare genetic disorders
This is a prospective, registry study of infants with genetic disorders being seen clinically in the NICU GraDS program.
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
4 Years
ALL
No
Sponsors
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Boston Children's Hospital
OTHER
Responsible Party
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Monica Wojcik
Instructor in Pediatrics
Principal Investigators
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Monica Wojcik, MD
Role: PRINCIPAL_INVESTIGATOR
Boston Children's Hospital
Locations
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Boston Children's Hospital
Boston, Massachusetts, United States
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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IRB-P00031382
Identifier Type: -
Identifier Source: org_study_id
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