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. 2025 May 30;27:e72573. doi: 10.2196/72573

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©Jens Declerck, Joanne Lee, Anando Sen, Avril Palmeri, Rianne Oostenbrink, Viviana Giannuzzi, Simon Woodworth, Salma Malik, Fenna Mahler, Beate Aurich, Rebecca Leary, Dipak Kalra, Volker Straub. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 30.05.2025.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

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Percentage-stacked bar plot for neurofibromatosis (NF) data items. Each color represents the percentage of sites collecting the data items in a particular format. EHR: electronic health record.