NCT07048574

Brief Summary

This is a longitudinal, observational epidemiological study designed to estimate the prevalence of depression, anxiety, and behavior problems in children ages 18 months through 11 years with cystic fibrosis (CF).

Trial Health

77
On Track

Trial Health Score

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

Enrollment
600

participants targeted

Target at P75+ for all trials

Timeline
25mo left

Started Jun 2025

Typical duration for all trials

Geographic Reach
1 country

13 active sites

Status
recruiting

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

Study Progress32%
Jun 2025Jun 2028

Study Start

First participant enrolled

June 2, 2025

Completed
6 days until next milestone

First Submitted

Initial submission to the registry

June 8, 2025

Completed
24 days until next milestone

First Posted

Study publicly available on registry

July 2, 2025

Completed
11 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 1, 2026

Expected
2.1 years until next milestone

Study Completion

Last participant's last visit for all outcomes

June 30, 2028

Last Updated

July 2, 2025

Status Verified

June 1, 2025

Enrollment Period

12 months

First QC Date

June 8, 2025

Last Update Submit

June 29, 2025

Conditions

Keywords

Cystic FibrosisChildrenMental health screeningDepressionAnxietyCFTR modulatorsNeuropsychiatric adverse events

Outcome Measures

Primary Outcomes (1)

  • To estimate the national prevalence of depression, anxiety, and behavior problems longitudinally in early childhood (18 months - 5 years) and school-age children (6 - 11 years)

    Parents/caregivers will complete the Behavior Assessment System for Children, Third Edition (BASC-3). Children aged 8-11 years will complete the BASC-3 self-report.

    07/01/2024 - 06/30/2028

Secondary Outcomes (1)

  • Evaluate and compare the performance of Pediatric Symptom Checklist (PSC) and Patient Reported Outcomes Measurement Information System (PROMIS ) compared to the Behavior Assessment System fo Children, Third Edition (BASC).

    07/01/2024 - 06/30/2028

Study Arms (2)

Preschool / Early Childhood Group (18 mos - 5 years)

300 children with CF and their parents will be recruited. This cohort will help identify early signs of internalizing and externalizing behaviors, attention-related concerns, and the impact of CF treatments on psychosocial health. Children in this cohort may also be identified for participation in Aim 3 if they are on or eligible for modulator therapy.

School-Age Group (6 - 11 years)

300 children with CF and their parents will be recruited. Includes school-aged children who can self-report their emotional and behavioral health, beginning at age 8 years. This group will be assessed for emerging mental health symptoms, cognitive development, and procedural anxiety related to CF treatments. Children in this cohort may also be identified for participation in Aim 3 if they are on or eligible for modulator therapy.

Eligibility Criteria

Age18 Months - 11 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)
Sampling MethodProbability Sample
Study Population

Children with Cystic Fibrosis between 18 months and 11 years

You may qualify if:

  • Child with a diagnosis of Cystic fibrosis (CF) actively followed by the CF care team at a participating site
  • Child is age 18 months thru 11 years
  • English and/or Spanish speaking
  • Parent/legal guardian willing and able to give informed consent, and for minor participants ages 7 thru 11 years able to give assent.

You may not qualify if:

  • Unable or unwilling to participate in study procedures, or at Site PI discretion.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (13)

Children's Hospital of Orange County

Orange, California, 92868, United States

RECRUITING

Children's Hospital Colorado

Aurora, Colorado, 80045, United States

RECRUITING

Joe DiMaggio

Hollywood, Florida, 33021, United States

RECRUITING

Nemours Foundation

Orlando, Florida, 32827, United States

RECRUITING

Indiana University

Bloomington, Indiana, 47405, United States

RECRUITING

Massachusetts General Hospital

Boston, Massachusetts, 02114, United States

RECRUITING

University at Buffalo

Buffalo, New York, 14215, United States

RECRUITING

University of North Carolina School of Medicine

Chapel Hill, North Carolina, 27599, United States

RECRUITING

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229, United States

RECRUITING

Brown University Health

Providence, Rhode Island, 02903, United States

ACTIVE NOT RECRUITING

UT Southwestern

Plano, Texas, 75235, United States

RECRUITING

Children's Hospital of Richmond at Virginia Commonwealth University

Richmond, Virginia, 23219, United States

RECRUITING

Seattle Children's Hospital

Seattle, Washington, 98105, United States

RECRUITING

Related Publications (1)

  • Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Sole A, Tibosch MM, Bergsten Brucefors A, Yuksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014 Dec;69(12):1090-7. doi: 10.1136/thoraxjnl-2014-205983. Epub 2014 Sep 21.

    PMID: 25246663BACKGROUND

MeSH Terms

Conditions

Cystic FibrosisDepressionAnxiety Disorders

Condition Hierarchy (Ancestors)

Pancreatic DiseasesDigestive System DiseasesLung DiseasesRespiratory Tract DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesInfant, Newborn, DiseasesBehavioral SymptomsBehaviorMental Disorders

Central Study Contacts

Beth A Smith, MD

CONTACT

Minu Mohan, MPH

CONTACT

Study Design

Study Type
observational
Observational Model
OTHER
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Principal Investigator

Study Record Dates

First Submitted

June 8, 2025

First Posted

July 2, 2025

Study Start

June 2, 2025

Primary Completion (Estimated)

June 1, 2026

Study Completion (Estimated)

June 30, 2028

Last Updated

July 2, 2025

Record last verified: 2025-06

Data Sharing

IPD Sharing
Will share

An application process will be established for external data requests. Initially, data access will be granted upon request by Brown University Health (BUH), with full public access only after a defined period following study completion. Beyond academic publications, BUH will contribute to the creation of publicly available study summaries, ensuring that key findings are accessible to the CF community, healthcare providers, and patient advocacy groups.

Shared Documents
STUDY PROTOCOL, SAP, ICF, CSR, ANALYTIC CODE

Locations