Orphanet Journal of Rare Diseases
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Ikenaga, C., Findlay, A.R., Seiffert, M. et al. Phenotypic diversity in an international Cure VCP Disease registry. Orphanet J Rare Dis 15, 267 (2020). https://doi.org/10.1186/s13023-020-01551-0 This 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.
Ikenaga, Chiseko; Findlay, Andrew R; Seiffert, Michelle; Peck, Allison; Peck, Nathan; Johnson, Nicholas E; Statland, Jeffrey M; and Weihl, Conrad C, "Phenotypic diversity in an international Cure VCP Disease registry." Orphanet Journal of Rare Diseases. 15, 1. 267 (2020).
Figure S1 CoRDS Registry questionnaire. Questionnaire composed of 81 questions regarding to contact information, socio-demographic information, diagnosis, family history, and quality of life.
CUREVCP.pdf (304 kB)
Figure S2 Cure VCP Disease, Inc. questionnaire. Questionnaire composed of 69 questions regarding to mutation type, diagnoses, quality of life, and cognitive/bulbar/respiratory/truncal/upper extremity/lower extremity functions.