D81.0
Conditions
Interventions
prospective multicenter data collection of the clinical presentation, transplantation or cellular therapy and follow up of all patients with SCID treated in Austria, Switzerland and Germany
collection of biomaterials in a centralized biobank
clinical counseling is offered by members of the steering committee.
Sponsors
Universitätsklinikum UlmKlinik für Kinder- und Jugendmedizin
Eligibility
Sex/Gender
All
Age
No minimum to 2 Years
Inclusion criteria
Inclusion criteria: =24 months of age at diagnosis clinical (atypical/ severe infections, signs of Omenn´s syndrome or autoimmune phenomena, failure to thrive, positive family Hx for SCID) and lab criteria (maternal T cells, reduced T-cell-count/ T-cell-proliferation/ percentage of naive T cells, mutation in a gene associated with SCID); further criterium is a posuitive result in the neonatal screening for SCID.
Exclusion criteria
Exclusion criteria: age >24 months (despite meeting other criteria) missing infromed consent to participate in study
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| improvement of care, prospective and standardized data collection and clinical counseling | — |
Secondary
| Measure | Time frame |
|---|---|
| basic science and improvement of clinical care | — |
Countries
Austria, Germany, Switzerland
Contacts
Public ContactManfred Hönig
Universitätsklinikum UlmKlinik für Kinder- und Jugendmedizin
Outcome results
None listed