NCT04828382

Brief Summary

In this study, the investigators aim to evaluate changes in lung function in women with cystic fibrosis (CF) during pregnancy and for 2 years after pregnancy based on exposure to highly effective cystic fibrosis transmembrane conductance regulator (CFTR) modulators.

Trial Health

75
On Track

Trial Health Score

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

Enrollment
285

participants targeted

Target at P75+ for all trials

Timeline
14mo left

Started Sep 2021

Longer than P75 for all trials

Geographic Reach
1 country

40 active sites

Status
active not 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 Progress80%
Sep 2021Jun 2027

First Submitted

Initial submission to the registry

March 22, 2021

Completed
11 days until next milestone

First Posted

Study publicly available on registry

April 2, 2021

Completed
6 months until next milestone

Study Start

First participant enrolled

September 30, 2021

Completed
5.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 30, 2027

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

June 30, 2027

Last Updated

November 3, 2025

Status Verified

October 1, 2025

Enrollment Period

5.8 years

First QC Date

March 22, 2021

Last Update Submit

October 30, 2025

Conditions

Keywords

Pregnancy/obstetric health in women with cystic fibrosisPregnancyCFTR modulatorsCystic Fibrosis

Outcome Measures

Primary Outcomes (2)

  • Forced expiratory volume at one second (FEV1) percent predicted after delivery and restart of modulators

    Change in FEV1 percent predicted after delivery and restart of modulators relative to measures assessed prior to pregnancy

    42 weeks

  • Forced expiratory volume at one second (FEV1) percent predicted after delivery

    Change in FEV1 percent predicted after delivery relative to measures assessed prior to pregnancy

    42 weeks

Eligibility Criteria

Age16 Years+
Sexfemale
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Study participants will be recruited at Cystic Fibrosis Foundation's Therapeutics Development Network study sites. Pregnant women appearing for regular clinical care at these participating centers will be approached for enrollment.

You may qualify if:

  • Pregnant, intending to continue pregnancy, enrolled in the Cystic Fibrosis Foundation Patient Registry (CFFPR)

You may not qualify if:

  • None

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (40)

University of Alabama at Birmingham

Birmingham, Alabama, 35294, United States

Location

University of Arkansas for Medical Sciences

Little Rock, Arkansas, 72205, United States

Location

University of California San Diego

La Jolla, California, 92093, United States

Location

National Jewish Health

Denver, Colorado, 80206, United States

Location

University of Florida

Gainesville, Florida, 32610, United States

Location

Joe DiMaggio Children's Hospital

Hollywood, Florida, 33021, United States

Location

Emory University

Atlanta, Georgia, 30327, United States

Location

Saint Luke's Cystic Fibrosis Center of Idaho

Boise, Idaho, 83702, United States

Location

Indiana University Medical Center

Indianapolis, Indiana, 46202, United States

Location

University of Kansas Medical Center

Kansas City, Kansas, 66160, United States

Location

University of Kentucky

Lexington, Kentucky, 40536, United States

Location

Tulane University

New Orleans, Louisiana, 70112, United States

Location

John Hopkins Hospital

Baltimore, Maryland, 21205, United States

Location

Massachusetts General Hospital

Boston, Massachusetts, 02114, United States

Location

Boston Children's Hospital, Brigham & Women's Hospital

Boston, Massachusetts, 02115, United States

Location

University of Michigan Health System

Ann Arbor, Michigan, 48109, United States

Location

Helen DeVos Children's Hospital

Grand Rapids, Michigan, 49546, United States

Location

The Minnesota Cystic Fibrosis Center

Minneapolis, Minnesota, 55455, United States

Location

Washington University School of Medicine

St Louis, Missouri, 63110, United States

Location

University of Nebraska Medical Center

Omaha, Nebraska, 69198, United States

Location

The Cystic Fibrosis Center of Western New York

Buffalo, New York, 14203, United States

Location

Columbia University Cystic Fibrosis Program

New York, New York, 10032, United States

Location

University of Rochester Medical Center Strong Memorial

Rochester, New York, 14642, United States

Location

SUNY Upstate Medical University

Syracuse, New York, 13210, United States

Location

University of North Carolina at Chapel Hill

Chapel Hill, North Carolina, 27517, United States

Location

University of Cincinnati Medical Center

Cincinnati, Ohio, 45267, United States

Location

Rainbow Babies and Children's Hospital/University Hospitals Cleveland Medical Center

Cleveland, Ohio, 44106, United States

Location

Cleveland Clinic Cystic Fibrosis Program

Cleveland, Ohio, 44195, United States

Location

Nationwide Children's Hospital

Columbus, Ohio, 43205, United States

Location

Oregon Health Sciences University

Portland, Oregon, 97239, United States

Location

University of Pennsylvania

Philadelphia, Pennsylvania, 19104, United States

Location

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, 15224, United States

Location

Medical University of South Carolina

Charleston, South Carolina, 29425, United States

Location

Vanderbilt Children's Hospital

Nashville, Tennessee, 37232, United States

Location

University of Texas Southwestern

Dallas, Texas, 75390, United States

Location

Baylor College of Medicine

Houston, Texas, 77030, United States

Location

Intermountain Cystic Fibrosis Center

Salt Lake City, Utah, 84132, United States

Location

University of Washington Medical Center

Seattle, Washington, 98195, United States

Location

University of Wisconsin

Madison, Wisconsin, 53792, United States

Location

Froedtert & Medical College of Wisconsin

Milwaukee, Wisconsin, 53226, United States

Location

Related Publications (1)

  • Goralski JL, Talati AN, Hardisty EE, Vora NL. Pregnancy in People With Cystic Fibrosis Treated With Highly Effective Modulator Therapy. Obstet Gynecol. 2025 Jan 1;145(1):47-54. doi: 10.1097/AOG.0000000000005732. Epub 2024 Sep 19.

Biospecimen

Retention: SAMPLES WITHOUT DNA

Serum, plasma

MeSH Terms

Conditions

Cystic Fibrosis

Condition Hierarchy (Ancestors)

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

Study Officials

  • Raksha Jain, MD

    University of Texas

    PRINCIPAL INVESTIGATOR
  • Jennifer Taylor-Cousar

    National Jewish

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR INVESTIGATOR
PI Title
Director of Statistical Research

Study Record Dates

First Submitted

March 22, 2021

First Posted

April 2, 2021

Study Start

September 30, 2021

Primary Completion (Estimated)

June 30, 2027

Study Completion (Estimated)

June 30, 2027

Last Updated

November 3, 2025

Record last verified: 2025-10

Locations