Budesonide is an anti-inflammatory medication that works by decreasing the immune system's overreaction. In the treatment of eosinophilic esophagitis, especially with Jorveza or a preparation made in a pharmacy, it reduces the production of substances responsible for inflammation in the esophagus. This action reduces the accumulation of certain inflammatory cells (eosinophils) and thus improves the symptoms and lesions of the esophagus.
Dystrophic epidermolysis bullosa (EBD) is a rare genetic disease that makes the skin and mucous membranes very fragile. Blisters, sores and wounds can appear as a result of even minor trauma. Scarring is often abnormal and can cause tissue to shrink or shrink.
To date, only two studies involving a total of eight children with EBD have evaluated a budesonide-based preparation. The results show an improvement in swallowing difficulties (dysphagia) as well as good tolerance of the treatment. However, there are currently no published data regarding the use of Jorveza in the form of an orally disintegrating tablet in adults with EBD.
Through the follow-up of patients treated at the MAGEC reference center, specialized in rare genetic diseases of the skin and mucous membranes, we aim to evaluate the interest and effects of budesonide treatment in individuals with EBD presenting with dysphagia.
None
None
Single group
The retrospective data collected will be entered into an eCRF and then analyzed centrally
Other interventionthere is no treatment for the study but the patient take a treatment out of MMA and the retrospectives datas collected will be entered into an eCRF and then analyzed centrally by the sponsor
overall patient satisfaction with the treatment
5-point Likert scale (4: complete satisfaction and 0: no change)
overall patient satisfaction with the treatment
5-point Likert scale (4: complete satisfaction and 0: no change)
The assessment of budesonide treatment tolerance in patients
Assessed based on the side effects and/or reasons for stopping the treatment recorded in the medical file.
Reduce meal time
yes or no
Reduce meal time
yes or no
oesophagal expansion number
number of necessary expansions during the study
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