Prospective Study of Pregnancy in Women With Cystic Fibrosis

Purpose

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.

Conditions

  • Pregnancy Related
  • Cystic Fibrosis

Eligibility

Eligible Ages
Over 16 Years
Eligible Genders
Female
Accepts Healthy Volunteers
No

Inclusion Criteria

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

Exclusion Criteria

  • None

Study Design

Phase
Study Type
Observational
Observational Model
Cohort
Time Perspective
Prospective

Recruiting Locations

University of Alabama at Birmingham
Birmingham, Alabama 35294
Contact:
Heather Hathorne
hyhathorne@uabmc.edu

University of Arkansas for Medical Sciences
Little Rock, Arkansas 72205
Contact:
Kathleen Hicks
HicksKathleenT@uams.edu

University of California San Diego
La Jolla, California 92093
Contact:
Gabriel Querido
glquerido@health.ucsd.edu

Center for Cystic Fibrosis at Keck Medical Center of USC
Los Angeles, California 90033
Contact:
Lynn Fukushima
lynn.fukushima@med.usc.edu

National Jewish Health
Denver, Colorado 80206
Contact:
Alix Wilson
wilsona@njhealth.org

University of Florida
Gainesville, Florida 32610
Contact:
Alexa A Smith
alexa.howell@ufl.edu

Joe DiMaggio Children's Hospital
Hollywood, Florida 33021
Contact:
Doris Alaby
dalaby@mhs.net

Emory University
Atlanta, Georgia 30327
Contact:
Ashleigh Streby
ashleigh.streby@emory.edu

Saint Luke's Cystic Fibrosis Center of Idaho
Boise, Idaho 83702
Contact:
Lejla Godusevic
godusevl@slhs.org

Indiana University Medical Center
Indianapolis, Indiana 46202
Contact:
Lisa Bendy
lbendy@iu.edu

University of Kansas Medical Center
Kansas City, Kansas 66160
Contact:
Lawrence Scott
lscott2@kumc.edu

University of Kentucky
Lexington, Kentucky 40536
Contact:
Chase Whitaker
chase.whitaker@uky.edu

Tulane University
New Orleans, Louisiana 70112
Contact:
Carol Rockwell
crockwell@tulane.edu

John Hopkins Hospital
Baltimore, Maryland 21205
Contact:
Jeanne Pinto
jpinto4@jh.edu

Massachusetts General Hospital
Boston, Massachusetts 02114
Contact:
Margot Hardcastle
mhardcastle@mgh.harvard.edu

Boston Children's Hospital, Brigham & Women's Hospital
Boston, Massachusetts 02115
Contact:
Robert Fowler
Robert.fowler@childrens.harvard.edu

University of Michigan Health System
Ann Arbor, Michigan 48109
Contact:
Dawn Kruse
dmkruse@med.umich.edu

Helen DeVos Children's Hospital
Grand Rapids, Michigan 49546
Contact:
Heather Mulroy
heather.mulroy@spectrumhealth.org

The Minnesota Cystic Fibrosis Center
Minneapolis, Minnesota 55455
Contact:
CF Trials Contact
cftrials@umn.edu

Washington University School of Medicine
Saint Louis, Missouri 63110
Contact:
Irma Bauer
irmabauer@wustl.edu

University of Nebraska Medical Center
Omaha, Nebraska 69198
Contact:
Michel Veit
michel.veit@unmc.edu

The Cystic Fibrosis Center of Western New York
Buffalo, New York 14203
Contact:
Nadine Caci
ncaci@upa.chob.edu

Columbia University Cystic Fibrosis Program
New York, New York 10032
Contact:
Emily DiMango
ead3@cumc.columbia.edu

University of Rochester Medical Center Strong Memorial
Rochester, New York 14642
Contact:
Barbara Johnson
Barbara_Johnson@URMC.Rochester.edu

SUNY Upstate Medical University
Syracuse, New York 13210
Contact:
Mary Forell
forellm@upstate.edu

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina 27517
Contact:
Julie Goudy
julie_goudy@med.unc.edu

University of Cincinnati Medical Center
Cincinnati, Ohio 45267
Contact:
Nicole Hummel
Nicole.Hummel@UCHealth.com

Rainbow Babies and Children's Hospital/University Hospitals Cleveland Medical Center
Cleveland, Ohio 44106
Contact:
General Contact Primary RC & Participant Contact
RainbowCFResearch@UHhospitals.org

Cleveland Clinic Cystic Fibrosis Program
Cleveland, Ohio 44195
Contact:
Dave Weaver
weaverd@ccf.org

Nationwide Children's Hospital
Columbus, Ohio 43205
Contact:
Diana Gilmore
Diana.Gilmore@nationwidechildrens.org

Oregon Health Sciences University
Portland, Oregon 97239
Contact:
Jenna Bucher
bucherj@ohsu.edu

University of Pennsylvania
Philadelphia, Pennsylvania 19104
Contact:
Melissa Molter
melissa.molter@pennmedicine.upenn.edu

University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania 15224
Contact:
Elizabeth Hartigan
elizabeth.hartigan@chp.edu

Medical University of South Carolina
Charleston, South Carolina 29425
Contact:
Ashley Warden
jonesash@musc.edu

Vanderbilt Children's Hospital
Nashville, Tennessee 37232
Contact:
Brijesh Patel
brijesh.patel@vumc.org

University of Texas Southwestern
Dallas, Texas 75390
Contact:
Ashley Keller
Ashley.Keller@UTSouthwestern.edu

Baylor College of Medicine
Houston, Texas 77030
Contact:
Tracy Mosely
tmosely@bcm.edu

Intermountain Cystic Fibrosis Center
Salt Lake City, Utah 84132
Contact:
Kristyn Packer
kristyn.packer@hsc.utah.edu

University of Washington Medical Center
Seattle, Washington 98195
Contact:
Lauren Bartlett
lrejman@uw.edu

University of Wisconsin
Madison, Wisconsin 53792
Contact:
Melanie Nelson
mnelson@pediatrics.wisc.edu

Froedtert & Medical College of Wisconsin
Milwaukee, Wisconsin 53226
Contact:
Erin Hubertz
ehubertz@mcw.edu

More Details

NCT ID
NCT04828382
Status
Recruiting
Sponsor
Amalia Magaret

Study Contact

Natallia Cameron, MS
206-884-7550
natallia.cameron@seattlechildrens.org

Detailed Description

Advances in medical treatment, including the use of highly effective CFTR modulators have greatly increased life expectancy in women with CF, but the effects of pregnancy on women with CF are yet unknown. It is anticipated that over 90% of the CF population will be on CFTR modulators in the next few years. More knowledge about the effects of CFTR modulators in pregnancy is needed. This is a prospective, multi-center, observational study to follow pregnant women with CF, conducted at 40 US sites. Women are enrolled in the first trimester of pregnancy and assessed every 3 months during pregnancy and during the first year after delivery, then every 6 months for an additional year. Changes in lung function over the course of pregnancy will be evaluated based on cumulative CFTR modulator use while pregnant while accounting for other factors that may influence changes in pulmonary function: baseline lung function, genotype, history of exacerbations, and pre-existing co-morbid conditions.