Clinical Trials Directory

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RecruitingNCT03052283

Development and Validation of a Disease Specific PROM to Assess Abdominal Involvement in Patients With CF (CFAbd-Score)

Evaluation and Validation of a New Questionnaire to Identify and Quantify Abdominal Symptoms in Patients With Cystic Fibrosis Following FDA Guidelines: the CF Abd-Score (Primarily Named JenAbdomen-CF Score)

Status
Recruiting
Phase
Study type
Observational
Enrollment
2,000 (estimated)
Sponsor
Medizinische Hochschule Brandenburg Theodor Fontane · Academic / Other
Sex
All
Age
Healthy volunteers
Accepted

Summary

Development, validation and evaluation of a new multimodal questionnaire to assess and quantify the abdominal involvement in patients with the inherited life shortening multi-organ disease Cystic fibrosis. In the stepwhise development of the patient reported outcome measures (PROM) repeadedly, CF-patients, their families as well as professionals working in different fields of CF-care will be included.

Detailed description

Development of a multimodal questionnaire considering the FDA guidelines for development of a PROM, the CFAbd-Score * Evaluation of reliability of the questionnaire by examining internal consistency and construct validity * Evaluation of reproducibility of the questionnaire by re-testing of patients * Assessment of cross-generational applicability of the questionnaire by sub-scoring of age groups * Evaluation of the responsiveness of the score by comparison with age-matched healthy controls * Assessment of putative relationships of abdominal symptoms with faecal inflammatory markers * Assessment of applicability of the questionnaire in other CF centers * Transfer the CFAbd-Score to other countries and languages Development and validation of a CF-specific tool for daily assessment of abdominal symptoms (patient diary), the CFAbd-day2day Development and validation of a CF-specific tool for assessment of abdominal symptoms in children \< 12 years of age, the CFAbd-kid

Conditions

Interventions

TypeNameDescription
DIAGNOSTIC_TESTQuestionnaire Patient Reported Outcome Measure (PROM)non-interventional

Timeline

Start date
2017-01-26
Primary completion
2026-12-31
Completion
2027-12-31
First posted
2017-02-14
Last updated
2023-04-04

Locations

2 sites across 1 country: Germany

Source: ClinicalTrials.gov record NCT03052283. Inclusion in this directory is not an endorsement.