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.
a sweat chloride of >60 mEq/L and/or
detection of 2 disease causing CFTR mutations with evidence of organ involvement.
Age-matched
Lacking ability to cooperate of patients /their families, respectively
Other diseases causing abdominal symptoms (Inflammatory bowel disease (IBD), alpha 1 antitrypsin deficiency, celiac disease, food allergy, gastroenteritis, etc.)
Medizinische Hochschule Brandenburg Theodor Fontane
Lead sponsor
University of Jena
Collaborator