Improve Research Reproducibility A Bio-protocol resource
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KL Kimberly LeBlanc
EK Emily G. Kelley
AN Anna Nagy
JB Jorick Bater
TB Tala Berro
MM Molly A. McGuinness
CS Courtney Studwell
MM Matthew Might
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UDN participants and parents/guardians of participants were invited to take part in this study. To be eligible, participants were required to have undergone evaluation through one of the UDN clinical sites and determined by the site to potentially benefit from the sharing of information publicly. The site’s decision was based on genotypic and phenotypic findings that could benefit from matching with similar individuals. All participants and parents/guardians who expressed interest and met the inclusion criteria were contacted regarding participation from April 14, 2016 to April 13, 2020 by research assistants at the UDN Coordinating Center, which manages network-wide activities. The study protocol was approved by the NIH Institutional Review Board (IRB) (protocol 15-HG-0130).

Copyright and License information: The Author(s) ©2021
Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

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