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A Study to Evaluate the Safety of Long-term Ivacaftor Treatment in Participants With Cystic Fibrosis Who Are Less Than 24 Months of Age at Treatment Initiation and Have an Approved Ivacaftor-Responsive Mutation

Phase 3
Completed
Conditions
Cystic Fibrosis
Interventions
Drug: IVA
Registration Number
NCT03277196
Lead Sponsor
Vertex Pharmaceuticals Incorporated
Brief Summary

This is a Phase 3, 2-arm, multicenter study with an open-label ivacaftor arm and an observational arm to evaluate the safety and efficacy of long-term ivacaftor treatment in participants with cystic fibrosis (CF) who are \<24 months of age at treatment initiation and have an approved Ivacaftor-Responsive mutation.

Detailed Description

Not available

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
86
Inclusion Criteria

Ivacaftor Arm: Participants From Study 124 (NCT02725567 ) Part B:

  • Participants transitioning from Study 124 Part B must have completed the last study visit of Study 124 Part B.
  • As judged by the investigator, parent or legal guardian must be able to understand protocol requirements, restrictions, and instructions; and must sign the informed consent form (ICF).

Ivacaftor Arm: Participants Not From Study 124 Part B:

  • Confirmed diagnosis of CF, or 2 CF-causing mutations.
  • An ivacaftor- responsive CFTR mutation on at least 1 allele. Participants will be eligible in countries/regions where ivacaftor is approved for use in participants 2 years of age and older.
  • As judged by the investigator, parent or legal guardian must be able to understand protocol requirements, restrictions, and instructions; and must sign the ICF.

Observational Arm:

  • Received ivacaftor treatment in Study 124 Part B and elected not to enroll or ineligible to enroll in the ivacaftor arm of Study 126.
Exclusion Criteria

Ivacaftor Arm: Participants From Study 124 Part B:

  • History of any illness or condition that, in the opinion of the investigator, might confound the results of the study or pose an additional risk in administering ivacaftor to the participant.
  • Participants receiving commercially available ivacaftor treatment

Ivacaftor Arm: Participants Not From Study 124 Part B:

  • History of any illness or condition that, in the opinion of the investigator, might confound the results of the study or pose an additional risk in administering ivacaftor to the participant
  • An acute upper or lower respiratory infection, or pulmonary exacerbation, or changes in therapy for pulmonary disease within 4 weeks of Day 1
  • Abnormal liver function at screening
  • Hemoglobin <9.5 g/dL at screening
  • History of solid organ or hematological transplantation
  • Use of any moderate or strong inducers or inhibitors of CYP3A within 2 weeks of Day 1

Observational Arm:

  • Receiving ivacaftor treatment

Other protocol defined Inclusion/Exclusion criteria may apply.

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Arm && Interventions
GroupInterventionDescription
Ivacaftor ArmIVAParticipants less than (\<) 24 months of age and weighing 5 to less than (\<) 7 kilogram (kg) received 25 mg IVA every 12 hours (q12h), 7 to \<14 kg received 50 mg IVA q12h, and those weighing 14 to \<25 kg received 75 mg IVA q12h. Participants more than or equal (\>=) 24 months of age and weighing \<14 kg received 50 mg IVA q12h, and those weighing more than or equal to (\>=)14 kg received 75 mg IVA q12h in the treatment period for up to 96 weeks. Doses were determined based on safety and pharmacokinetic (PK) data from parent study, age and weight.
Primary Outcome Measures
NameTimeMethod
Safety and Tolerability as Assessed by Number of Participants With Treatment-Emergent Adverse Events (TEAEs) and Serious TEAEsDay 1 up to Week 120
Secondary Outcome Measures
NameTimeMethod
Absolute Change in Sweat ChlorideFrom Baseline at Week 96

Sweat samples were collected using an approved collection device.

Trial Locations

Locations (29)

Center for Advanced Pediatrics

🇺🇸

Atlanta, Georgia, United States

Northwestern University

🇺🇸

Chicago, Illinois, United States

Texas Children's Hospital

🇺🇸

Houston, Texas, United States

Childrens's Hospitals and Clinics of Minnnesota

🇺🇸

Minneapolis, Minnesota, United States

Children's Health Ireland at Crumlin

🇮🇪

Dublin, Ireland

Alfred I DuPont Hospital for Children

🇺🇸

Wilmington, Delaware, United States

The Hospital for Sick Children

🇨🇦

Toronto, Ontario, Canada

Children's University Hospital Temple Street

🇮🇪

Dublin, Ireland

University Hospital Limerick

🇮🇪

Limerick, Ireland

Billings Clinic Hospital

🇺🇸

Billings, Montana, United States

University of Alabama at Birmingham

🇺🇸

Birmingham, Alabama, United States

Nemours Children's Hospital

🇺🇸

Orlando, Florida, United States

John Hopkins Hospital

🇺🇸

Baltimore, Maryland, United States

Riley Hospital for Children at Indiana University Health

🇺🇸

Indianapolis, Indiana, United States

Boston Children's Hospital

🇺🇸

Boston, Massachusetts, United States

Children's Hospital of Philadelphia

🇺🇸

Philadelphia, Pennsylvania, United States

Nationwide Children's Hospital

🇺🇸

Columbus, Ohio, United States

Children's Mercy Hospital

🇺🇸

Kansas City, Missouri, United States

Seattle Children's Hospital

🇺🇸

Seattle, Washington, United States

University of Wisconsin

🇺🇸

Madison, Wisconsin, United States

Queensland Children's Hospital

🇦🇺

South Brisbane, Australia

Universitaetsklinikum Heidelberg, Zenter fuer Kinder-und Jugendmedizin

🇩🇪

Heidelberg, Germany

Paediatric Clinical Research Facility

🇬🇧

Edinburgh, United Kingdom

Alder Hey Children's Alder Hey Children's NHS Foundation Trust

🇬🇧

Liverpool, United Kingdom

Great Ormond Street Hospital for Sick Children

🇬🇧

London, United Kingdom

Royal Brompton & Harefield NHS Founcation Trust, Royal BromptonHospital

🇬🇧

London, United Kingdom

Oxford University Hospitals NHS Trust, John Radcliffe Hospital

🇬🇧

Oxford, United Kingdom

Royal Manchester Children's Hospital

🇬🇧

Manchester, United Kingdom

Stanford University

🇺🇸

Palo Alto, California, United States

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