Thorley, Eileen Mack
Iyer, Ravi G.
Wicks, Paul
Curran, Chris
Gandhi, Sanjay K.
Abler, Victor
Anderson, Karen E.
Carlozzi, Noelle E.
Article History
First Online: 11 May 2018
Compliance with Ethical Standards
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: This study was funded by Teva Pharmaceutical Industries, Petach Tikva, Israel. We thank the patients and caregivers who participated in this study, and Yue Liu, PhD (Chameleon Communications International with funding from Teva Pharmaceutical Industries) for editorial assistance in the preparation of this manuscript.
: EMT, PW, and CC are employees of PatientsLikeMe. The PatientsLikeMe Research Team has received research funding (including conference support and consulting fees) from AbbVie, Accorda, Actelion, Alexion, Amgen, AstraZeneca, Avanir, Biogen, Boehringer Ingelheim, Celgene, EMD, Genentech, Genzyme, Janssen, Johnson & Johnson, Merck, Neuraltus, Novartis, Otsuka, Permobil, Pfizer, Sanofi, Shire, Takeda, Teva, and UCB. The PatientsLikeMe Research and Development Team has received research grant funding from Kaiser Permanente, the Robert Wood Johnson Foundation, Sage Bionetworks, The AKU Society, and the University of Maryland. PW also holds stock options in the company. He is an associate editor at the Journal of Medical Internet Research and is on the Editorial Boards of the BMJ, BMC Medicine, and Digital Biomarkers. He has received speaker fees from Bayer and honoraria from Roche, ARISLA, AMIA, IMI, PSI, and the BMJ. RGI and SKG are employees of Teva Pharmaceutical Industries. VA was an employee of Teva Pharmaceuticals Industries at the time of the study. KEA: Scientific Advisor: North American study Co-Principal Investigator for LEGATO-HD, Global Principal Investigator for AIM-TD, and Global Co-Principal Investigator for ARM-TD. Site Principal Investigator for Pride-HD, First-HD, ARC-HD: Teva. Scientific Advisor, Site Principal Investigator for ENROLL-HD: CHDI Foundation. Scientific Advisor: Prana. Site Principal Investigator: Vaccinex. Consultant to the NeuroNext 105 study: Azevan, salary support from the Griffin Foundation. She has also received honoraria from Vindico Medical Education. NEC is an Associate Professor at the University of Michigan. She currently has research grants from the NIH, the Craig H. Neilsen Foundation and Teva Pharmaceuticals; she is also supported as a co-investigator by grant funding from the NIH and CHDI. She provides patient reported outcome measurement selection and application consultation for Teva Pharmaceuticals.
: The study was reviewed by the New England Institutional Review Board (NEIRB) and designated a minimal-risk study; therefore, it was exempted from further review. Participants were provided with an informed consent form (approved by the NEIRB), which had to be understood and agreed upon prior to any data collection. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
: Informed consent was obtained from all individual participants included in the study.
: The datasets generated and/or analyzed during the current study are available from the corresponding author on reasonable request.