Ellerbroek, V. L., Bonfig, W., Doerr, H. -G., Bettendorf, M., Hauffa, B., Fricke-Otto, S., Rohrer, T., Reschke, F., Schoenau, E., Schwab, K. O., Kapelari, K., Roehl, F. -W., Mohnike, K. and Holl, R. W. (2015). Long-term Surveillance of Children with Congenital Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (AQUAPE Hypo Dok). Klinische Padiatr., 227 (4). S. 199 - 206. STUTTGART: GEORG THIEME VERLAG KG. ISSN 1439-3824

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Abstract

Background: The German study group for quality assurance in pediatric endocrinology and the University of Ulm have established a software (Hypo Dok) for the documentation of longitudinal data of patients with congenital primary hypothyroidism (CH). Aim of this study was to analyse the long-term follow-up of patients with CH and to compare treatment with current guidelines. Methods/Patients: Anonymised data of 1 080 patients from 46 centres were statistically analysed. Results: Newborn screening result was available at a mean age of 7.3 days. Confirmation of the diagnosis was established at 8.4 days and therapy was started at 11 days. The average screening TSH was 180.0 mIU/L. During the first 3 months mean levothyroxine (LT4) dose was 10.7 mu g/kg/day or 186.0 mu g/m(2)/day. Weight-, BMI-and height-SDS did not differ significantly from the normal population. Only 25 % of the patients (n = 262) underwent formal EQ/IQ-testing. Their average IQ was 98.8 +/- 13.2 points. Discussion: In Germany screening, confirmation and start of treatment of CH are within the recommended time frame of 14 days. Initial LT4-doses are adequate. The auxological long-term outcome of young CH patients is normal. The implementation of standardized IQ testing has to be improved in routine patient care. Conclusion: Longitudinal data of patients with CH was analysed and compared to current guidelines. Confirmation and start of treatment are - according to the recommendations. However standardised IQ testing requires improvement.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Ellerbroek, V. L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bonfig, W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Doerr, H. -G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bettendorf, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hauffa, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fricke-Otto, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rohrer, T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Reschke, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schoenau, E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schwab, K. O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kapelari, K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Roehl, F. -W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mohnike, K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Holl, R. W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-399668
DOI: 10.1055/s-0035-1549978
Journal or Publication Title: Klinische Padiatr.
Volume: 227
Number: 4
Page Range: S. 199 - 206
Date: 2015
Publisher: GEORG THIEME VERLAG KG
Place of Publication: STUTTGART
ISSN: 1439-3824
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
NEONATAL SCREENING-PROGRAMS; GUIDELINES; MANAGEMENT; T-4Multiple languages
PediatricsMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/39966

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