K90.0
Conditions
Interventions
Group 1: Observed are patients of all ages with diagnosed CeD (self-reported/ or reported by their custodians and, if possible verified by the patient´s treating physician) in Germany, who are registe
Sponsors
c/o Kompetenznetz Darmerkrankungen e. V.
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. diagnosed celiac disease (self-reported and if possible verified by attending physician) 2. signed informed declaration of consent (in the case of minors, additionally signed declaration of consent of the custodian)
Exclusion criteria
Exclusion criteria: 1. missing declaration of declaration of consent prior to documentation 2. Revocation of the declaration of consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Baseline and follow-up documentation of celiac disease patients in Germany through an online register with a special focus on the care situation with delayed diagnosis, sufficient diagnostic and therapeutic processing, dietary behaviour, quality of life and psychosocial impairment. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. assessing the efficiency and quality of care services provided by primary and secondary care providers (reviewing the use of conventional and new diagnostic tools, procedures and control examinations during the course of disease in accordance with current guidelines) from the patient's point of view. 2. to assess the current care situation from the perspective of the care providers in order to present the real, region-specific and specialisation-related state of information (in accordance with the celiac disease guidelines), the care providers' desire for optimised patient care and their perceived need for improved management of celiac disease patients. 3. systematisation of information on the offer, management and efficiency of therapy (diet), 4. evaluation of the psychosocial burden of the patients with regard to their illness and therapy (diet), 5. assessment of the economic burden (hospitalisation, rehabilitation, inability to work, total cost of celiac disease), 6. investigation of disease progression with regard to consequences, comorbidities and complications such as autoimmunity, refractory celiac disease and intestinal T-cell lymphomas. 7. identify potential patient populations for further research studies and study future research hypotheses based on the registry data collected. | — |
Countries
Germany
Contacts
Public ContactEugen Ioan Urzica
Kompetenznetz Darmerkrankungen e. V.
Outcome results
None listed