TIDES 2.0: Prevalence and Longitudinal Course of Depression, Anxiety, and Behavior Problems in Children With Cystic Fibrosis Under 12 Years of Age

NCT ID: NCT07048574

Last Updated: 2025-07-02

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

RECRUITING

Total Enrollment

600 participants

Study Classification

OBSERVATIONAL

Study Start Date

2025-06-02

Study Completion Date

2028-06-30

Brief Summary

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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).

Detailed Description

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Integration of mental health (MH) screening and treatment into cystic fibrosis (CF) care represents over 10 years of research and clinical progress, driven by elevated rates of depression and anxiety in the International Depression Epidemiological Study, MH guidelines, and CF Foundation implementation support to screen adolescents and adults in all CF Centers. Benefits of screening include earlier identification, greater access to care, reduced stigma, and positive uptake from the CF community.

However, TIDES did not include children with CF under 12 years. Depression and anxiety have increased dramatically in young children, with new guidelines for MH screening of children in primary care. Given the pediatric MH crisis and the widespread adoption of cystic fibrosis fibrosis transmembrane conductance regulator (CFTR) modulator therapy, which have been associated with adverse events, there is an urgent need to gather MH data in children with CF \<12 years. Thus, the goals of this study are to evaluate the national, longitudinal prevalence of depression, anxiety, and behavior problems in children with CF 18 months through 11 years, evaluate and compare the performance of two widely used brief screeners (criterion validity, sensitivity, specificity) to identify the optimal measures for this population, and characterize neuropsychiatric adverse events (AEs) associated with CFTR modulator therapy in this age group. Purposive randomized sampling will be used to recruit 600 children (half 18 mos.-5 yrs. and half 6-11 yrs.) at 16 CF Centers across the US. This study will estimate the prevalence of children above the clinical cut-score on each symptom domain (depression, anxiety, behavior problems) and evaluate their longitudinal course and predictors. Rigorous mixed methods will be used to describe any potential AEs perceived by parents or children to be associated with CFTR modulator therapy. This study will provide the groundwork to extend mental health screening and care to younger children with CF.

Conditions

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Cystic Fibrosis (CF)

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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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.

No interventions assigned to this group

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.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

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

Exclusion Criteria

* Unable or unwilling to participate in study procedures, or at Site PI discretion.
Minimum Eligible Age

18 Months

Maximum Eligible Age

11 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Cystic Fibrosis Foundation

OTHER

Sponsor Role collaborator

Brown University

OTHER

Sponsor Role collaborator

State University of New York at Buffalo

OTHER

Sponsor Role lead

Responsible Party

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Beth A Smith, MD

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Children's Hospital of Orange County

Orange, California, United States

Site Status RECRUITING

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status RECRUITING

Joe DiMaggio

Hollywood, Florida, United States

Site Status RECRUITING

Nemours Foundation

Orlando, Florida, United States

Site Status RECRUITING

Indiana University

Bloomington, Indiana, United States

Site Status RECRUITING

Massachusetts General Hospital

Boston, Massachusetts, United States

Site Status RECRUITING

University at Buffalo

Buffalo, New York, United States

Site Status RECRUITING

University of North Carolina School of Medicine

Chapel Hill, North Carolina, United States

Site Status RECRUITING

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

Brown University Health

Providence, Rhode Island, United States

Site Status ACTIVE_NOT_RECRUITING

UT Southwestern

Plano, Texas, United States

Site Status RECRUITING

Children's Hospital of Richmond at Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

Seattle Children's Hospital

Seattle, Washington, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Beth A Smith, MD

Role: CONTACT

716-898-5940

Minu Mohan, MPH

Role: CONTACT

Facility Contacts

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Adrianne Alpern, PhD

Role: primary

657-767-2730

Emily Muther, PhD

Role: primary

720- 777-3257

Alexandra L Quittner, PhD

Role: primary

305-992-2411

David Fedele, PhD

Role: primary

352-294-5765

Emma M Tillman, PhD, PharmD

Role: primary

(317) 274-2797

Anna M Georgiopoulos, MD

Role: primary

617-724 -6300

Danielle M Goetz, MD

Role: primary

716-323-0110

Mary Beth Prieur, PhD

Role: primary

919-843-3209

Stephanie Filigno, PhD

Role: primary

513-636-7793

Meghna Sathe, MD

Role: primary

214-456-8000

Michael S Schechter, MD, MPH

Role: primary

410- 550-7755

Freda Liu, PhD

Role: primary

206-987-3295

References

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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.

Reference Type BACKGROUND
PMID: 25246663 (View on PubMed)

Other Identifiers

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SMITH 24A0

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

STUDY00008868

Identifier Type: -

Identifier Source: org_study_id

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