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

Recruiting now

Conditions studied: Cystic Fibrosis

In brief

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.

Key facts

Study ID

NCT03052283

Run by

Medizinische Hochschule Brandenburg Theodor Fontane

People needed

2000

Starts

2017-01-26

Expected to finish

2027-12-31

Last updated by the study team

2023-04-04

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• CF cohort:
• Diagnosis of CF determined by
• a sweat chloride of >60 mEq/L and/or
• detection of 2 disease causing CFTR mutations with evidence of organ involvement.
• Healthy controls:
• Age-matched

You may not qualify if…

• CF cohort:
• Lacking ability to cooperate of patients /their families, respectively
• Healthy controls:
• Other diseases causing abdominal symptoms (Inflammatory bowel disease (IBD), alpha 1 antitrypsin deficiency, celiac disease, food allergy, gastroenteritis, etc.)

Where it is running

• Klinikum Westbrandenburg — Brandenburg an der Havel, Germany (enrolling)
• Medizinische Hochschule Brandenburg (MHB), University — Brandenburg an der Havel, Germany (enrolling)

Full record on ClinicalTrials.gov

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