Observational studyJournal of cystic fibrosis : official journal of the European Cystic Fibrosis Society2021
Designing the GALAXY study: Partnering with the cystic fibrosis community to optimize assessment of gastrointestinal symptoms.
Observational study in Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07632768 (The Return of the Pancreas), which is not on this map. Cited by 13 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
The Return of the Pancreas: Evaluating Impact of CFTR Modulators on Pancreatic Function
Who cites it
13 citing papers in PubMed.
- Study Design Considerations for the Evaluation of Pancreatic Enzyme Replacement Therapy (PERT) Products in People with Cystic Fibrosis: An Update.Clinical therapeutics · 2026Review
- Article
- Disorders of Gut-Brain Interaction in a Pediatric Cystic Fibrosis Cohort.Pediatric pulmonology · 2025Observational
- A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Presentation, characteristics and management of obstructive intestinal conditions in cystic fibrosis.Frontline gastroenterology · 2024Article
- Scoring Abdominal Symptoms in People with Cystic Fibrosis.Journal of clinical medicine · 2024Review
- Prevalence and characteristics of gastrointestinal disorders, medication use, and diagnostic interventions in pediatric patients with cystic fibrosis: a nested case-control analysis from the TriNetX EMR-derived global research network real-world dataset.Frontiers in gastroenterology (Lausanne, Switzerland) · 2024Article
- The current state of gastrointestinal motility evaluation in cystic fibrosis: a comprehensive literature review.Translational gastroenterology and hepatology · 2024Review
- Multicenter prospective study showing a high gastrointestinal symptom burden in cystic fibrosis.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2023Article
- Association between stool consistency and clinical variables among infants with cystic fibrosis: Findings from the BONUS study.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2022Article
- A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2022Review
- The Intestinal Microbiome and Cystic Fibrosis Transmembrane Conductance Regulator Modulators: Emerging Themes in the Management of Gastrointestinal Manifestations of Cystic Fibrosis.Current gastroenterology reports · 2021Review
- Utilization of electronic patient-reported outcome measures in cystic fibrosis research: Application to the GALAXY study.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021Article
Corrections and comments
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Authors and funding
15 authors.
Funding
Abstract
backgroundGastrointestinal (GI) involvement among persons with cystic fibrosis (CF) is highly prevalent, representing a significant source of morbidity. Persons with CF have identified GI concerns as a top research priority, yet universal clinical outcome measures capturing many of the GI symptoms experienced in CF are lacking. The GALAXY study was envisioned to address this unmet need.
methodsThe GALAXY study team partnered with Community Voice, a community of patients with CF and their caregivers, to identify the patient reported outcome measures that most accurately reflected their experience with GI symptoms in CF. We also surveyed CF care teams to identify the comfort level of various team members (providers, nurses and dieticians) in managing a variety of GI conditions.
resultsMembers of Community Voice identified the combination of PAC-SYM, PAGI-SYM, PAC-QOL and the Bristol Stool scale with three additional symptom-specific questions as patient-reported outcome measures that comprehensively captured the CF experience with GI disease. CF care team providers reported a high level of comfort in treating GI conditions including constipation (92%), GERD (93%), and gassiness (77%), however comfort level was limited to only first-line interventions.
conclusionBy partnering with persons with CF as well as their caregivers and medical providers, the GALAXY study is designed to uniquely capture the prevalence and severity of GI involvement among persons with CF in a manner that reflects the CF patient experience. The results of GALAXY will inform the development of future interventional trials and serve as a reproducible and objective study endpoint.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.