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Integrated Working Group "Recording/Treatment of Abdominal Multi-Organ Affection in patients with Cystic Fibrosis" (CF Abdominal)
Our team headed by Prof. Mainz has developed a CF-specific Patient Outcome Measure (PROM) to record and quantify multi-organ CF-related abdominal symptoms consistent with FDA guidance: the CFAbd Score (1-3). Now available in 9 languages, it is being applied in more than 15 international studies and in the clinical practice of CF treatment. Recently we developed a PROM for children (CFAbd Score.kid) and a patient diary (CFAbd-day2day).
In view of the worldwide shortage of qualified gastroenterologists, the extensive use of our score appears to make sense in order to record abdominal manifestations and complications in CF patients, also in peripheral clinics and practices. Score results can then be passed on, together with clinical and paraclinical findings, to gastroenterologists specialized in CF who may recommend further diagnostic and therapeutic procedures.
Another aspect of scientific interest is the multidisciplinary exploration of correlations between the symptoms identified with the CFAbd Score and parameters of gastrointestinal inflammation and imaging.
For more detailed information (in German) see here.