Children with neurofibromatosis 1 (NF1) may have a high burden of somatic disease and cognitive impairments, which can lead to poor academic performance. We evaluated school grades from exams ending mandatory schooling (usually around age 15 or 16 years) of children with NF1 in a population-based registry study using a within-school matched design. The study included 285 children with NF1 and 12,000 NF1-free peers who graduated from the same school and year during 2002–2015. We estimated overall and gender-specific grades by subject and compared the grades of children with NF1 with those of NF1-free peers in linear regression models. We also examined the effect of social and socioeconomic factors (immigration status and parental education, income and civil status) on grades and age at finalizing ninth grade. School grades varied considerably by socioeconomic stratum for all children; however, children with NF1 had lower grades by an average of 11–12% points in all subjects. In the adjusted models, children with NF1 had significantly lower grades than their NF1-free peers, with largest negative differences in grades observed for girls with NF1. Finally, children with NF1 were 0.2 (CI 0.1–0.2) years older than their peers on graduating from ninth grade, but only maternal educational modified the age at graduating. In conclusion, students with NF1 perform more poorly than their peers in all major school subjects. Gender had a strong effect on the association between NF1 and school grades; however, socioeconomic factors had a similar effect on grades for children with NF1 and their peers.
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All data are stored on a secure platform at Statistics Denmark (www.dst.dk/en) and can only be accessed remotely. The study group welcomes collaboration with other researchers. Study protocols can be planned in collaboration with us, and the data can be analysed accordingly at the server of Statistics Denmark. Access to data can only be made available for researchers who fulfil Danish legal requirements for access to personal sensitive data. Please contact Professor Jeanette Falck Winther (firstname.lastname@example.org) or senior researcher Line Kenborg (email@example.com) for further information.
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We gratefully dedicate this paper to the respected memory of Dr Sven Asger Sørensen, MD, DMSc (1936–2021). In the mid-1980s, he began the recontact and updating of a Danish national register of neurofibromatosis patients first assembled in the 1940s by A. Borberg. Dr Sørensen’s great contribution to the NF research made our current work feasible and possible.
The study was supported by a grant from the Leo Foundation, under award no. LF-OC-19-000088. The funder of the study had no role in study design, data collection, data analysis, data interpretation or writing of the report.
The authors declare no competing interests.
The study is part of the NF1 research program ‘Life with NF1’, which was originally approved by the Danish Protection Agency (Record 2014–41–2935). With reference to the EU General Data Protection Regulation (GDPR), the research project is listed in a local database (2018-DCRC-0012) at the Danish Cancer Society Research Center. The database provides an overview of ongoing research projects involving personal data under the GDPR and replaces the former notification from the Danish Data Protection Agency.
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Doser, K., Belmonte, F., Andersen, K.K. et al. School performance of children with neurofibromatosis 1: a nationwide population-based study. Eur J Hum Genet (2022). https://doi.org/10.1038/s41431-022-01149-z