We read the article with great interest (1). We agree with the authors that newborn screening is a major achievement in pediatrics for the early diagnosis of serious diseases. We can only agree with the authors’ request to establish a registry and continuous quality assurance. However, we miss the information that a registry for tracking patients has existed for the two endocrine diseases (congenital adrenal hyperplasia (CAH), in German adrenogenitales Syndrom [AGS], and congenital hypothyroidism) for over ten years (initially the AQUAPE registry; renamed by the German Society of Paediatric Endocrinology and Diabetes [Deutsche Gesellschaft für Kinderendokrinologie und -diabetologie] as the DGKED-Register, DGKED-QS).
The participating institutions (CAH (AGS): 53; hypothyroidism: 66) document indicators for a guideline-compliant therapy and course with standardized software and transmit anonymized data twice a year for evaluation. From this, benchmarking reports are created for each institution, and the results are published together (2, 3).
The registry currently includes 30687 examination appointments for 1773 patients with CAH (AGS), and 22504 examination appointments for 1920 patients with congenital hypothyroidism.
All pediatric endocrinology institutions in the German-speaking area are invited to participate in these registries (contact: www.peda-qs.de) in order to come closer to the goal of the most comprehensive possible follow-up of the patients recorded in the newborn screening.
Footnotes
Conflict of interest statement
The authors declare that no conflict of interest exists.
References
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