Prospective Newborn Screening for SCID in Germany: A First Analysis by the Pediatric Immunology Working Group (API).
Carsten SpeckmannUta NennstielManfred HönigMichael H AlbertSujal GhoshCatharina SchuetzInken BrockowFriederike HörsterTim NiehuesStephan EhlVolker WahnStephan BorteKai LehmbergUlrich BaumannRita BeierRenate KrügerShahrzad BakhtiarJoern-Sven KuehlChristian KlemannUdo KontnyUrsula HolzerAndrea MeinhardtHenner MorbachNora Naumann-BartschTobias RothoeftAlexandra Y KreinsE Graham DaviesDominik T SchneiderHorst V BernuthThomas KlingebielGeorg F HoffmannAnsgar SchulzFabian H HauckPublished in: Journal of clinical immunology (2023)
The German TREC-NBS represents the largest European SCID screening at this point. The incidence of SCID/leaky SCID/OS in Germany is approximately 1:54,000, very similar to previous observations from North American and European regions and countries where TREC-NBS was implemented. The newly founded API-CID network facilitates tracking and treatment of identified patients. Short-term HSCT outcome was excellent, but NBS and transplant registries will remain essential to evaluate the long-term outcome and to compare results across the rising numbers of TREC-NBS programs across Europe.