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PATIENCE Trial: Prospective Algorithm for Treatment of NTM in Cystic Fibrosis

Conditions
Cystic Fibrosis
Registration Number
NCT02419989
Lead Sponsor
National Jewish Health
Brief Summary

Isolation of nontuberculous mycobacteria (NTM) from the sputum of individuals with CF is an increasingly common finding, and the lack of an evidenced-based approach to treatment of NTM disease has been identified as one of the greatest unmet needs within the CF community. Current evidence predicts that the prevalence of NTM will remain relatively high in the CF population. Approaches to NTM disease treatment differ widely between centers, and expected outcomes are not known. This study is observational and follows current best practices. The study will help define response to treatment, and collect relevant data associated with treatment of NTM disease to build a framework for future therapeutic trials.

Detailed Description

Not available

Recruitment & Eligibility

Status
ENROLLING_BY_INVITATION
Sex
All
Target Recruitment
70
Inclusion Criteria
  1. Previous participation in PREDICT and diagnosis of NTM disease for the same species of NTM
  2. Intention to treat for NTM disease for M. avium complex or M. abscessus complex
  3. Written informed consent (and assent when applicable) obtained from participant or participant's legal representative
  4. Signed informed consent to participate in data submission to the CFF Patient Registry
  5. Be willing and able to initiate treatment for NTM and to adhere to study procedures in the context of clinical care, and other protocol requirements
Exclusion Criteria
  1. Pregnant or breastfeeding
  2. Has any other condition that, in the opinion of the Site Investigator/designee, would preclude informed consent or assent, make study participation unsafe, complicate interpretation of study outcome data, or otherwise interfere with achieving the study objectives

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Proportion who adhere to the protocol based on: number of respiratory cultures obtained per year, withdrawals or major deviations from protocol12 months following end of antibiotic treatment
Secondary Outcome Measures
NameTimeMethod
Variability between sites for NTM eradication success12 months following end of treatment
Proportion requiring antibiotic course change due to intolerance or lack of microbiological conversion (i.e. eradication from sputum)At end of treatment interval
Proportion who complete ≥ 12 months of treatment since first negative cultureAt end of treatment interval
Clinical outcomes (FEV1, growth parameters, CFQ-R)12 months following end of treatment
Duration and combinations of NTM treatment regimens receivedAt end of treatment interval
Proportion eradicating NTM defined by ≥ 12 months of negative cultures since end of treatment12 months following end of treatment
Time to treatment discontinuation due to treatment success12 months following end of treatment

Trial Locations

Locations (19)

Nationwide Children's Hospital

🇺🇸

Columbus, Ohio, United States

University of Pittsburgh

🇺🇸

Pittsburgh, Pennsylvania, United States

Northwestern University

🇺🇸

Chicago, Illinois, United States

CFF Pediatric Program Seattle Children's Hospital

🇺🇸

Seattle, Washington, United States

CFF Adult Program, University of Washington

🇺🇸

Seattle, Washington, United States

CFF Pediatric Program, University of Alabama

🇺🇸

Birmingham, Alabama, United States

University of California San Diego

🇺🇸

San Diego, California, United States

National Jewish Health

🇺🇸

Denver, Colorado, United States

Children's Hospital Colorado

🇺🇸

Aurora, Colorado, United States

CFF Adult Program, Johns Hopkins University

🇺🇸

Baltimore, Maryland, United States

CFF Pediatric Program, Columbia University

🇺🇸

New York, New York, United States

University of Vermont Medical Center

🇺🇸

Burlington, Vermont, United States

CFF Adult Program, The University of Texas Southwestern Medical Center at Dallas

🇺🇸

Dallas, Texas, United States

CFF Pediatric Program University of Michigan

🇺🇸

Ann Arbor, Michigan, United States

Children's Hospital of Los Angeles

🇺🇸

Los Angeles, California, United States

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

🇺🇸

Boston, Massachusetts, United States

University of Florida

🇺🇸

Gainesville, Florida, United States

Dartmouth Hitchcock Medical Center

🇺🇸

Lebanon, New Hampshire, United States

CFF Adult Program, University of North Carolina at Chapel Hill

🇺🇸

Chapel Hill, North Carolina, United States

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