Carlozzi, Noelle E.
Boileau, Nicholas R.
Perlmutter, Joel S.
Chou, Kelvin L.
Stout, Julie C.
Paulsen, Jane S.
McCormack, Michael K.
Cella, David
Nance, Martha A.
Lai, Jin-Shei
Dayalu, Praveen
Funding for this research was provided by:
National Institute of Neurological Disorders and Stroke (R01NS077946, R01NS040068)
National Center for Advancing Translational Sciences (UL1TR000433)
National Institutes of Health (Center for Inherited Disease Research)
CHDI Foundation
Article History
Received: 20 November 2017
Revised: 27 March 2018
Accepted: 29 March 2018
First Online: 23 April 2018
Compliance with ethical standards
:
: N. E. Carlozzi currently has research grants from the NIH; she is also supported by grant funding from the NIH and CHDI. She provides patient-reported outcome measurement selection and application consultation for Teva Pharmaceuticals. She declares no conflicts of interest. N. R. Boileau is supported by grant funding from the NIH; he declares no conflicts of interest. J. S. Perlmutter currently has research funding from the NIH, HDSA, CHDI, Michael J Fox Foundation, Barnes Jewish Hospital Foundation, the Lauren and Lee Fixel Family Foundation, and the APDA. He has received honoraria from the University of Rochester, American Academy of Neurology, Movement Disorders Society, Toronto Western Hospital, Alberta Innovates, Parkinson Disease Foundation, Columbia University, St. Louis University, Harvard University, University of Michigan, Huntington Study Group, Stanford University, University of Florida at Gainesville, and World Parkinson Congress. He declares no conflicts of interest. K. Chou currently has funding from the NIH and Cavion, receives royalties from UpToDate, Springer Publishing and Demos Health and serves as a consultant for Accordant and Sunovion Pharmaceuticals. He declares no conflicts of interest. J. C. Stout has received research funding in the past 3 years from the Australian National Health and Medical Research Council, University College London, the CHDI Foundation, Prana Biotechnology, and the University of California, Davis. She is a Director of Stout Neuropsych Pty Ltd, which has received funding from Omeros, Teva Pharmaceuticals, Vaccinex, and Isis. She has been a consultant to Prana Biotechnology and Roche. She receives compensation as a member of the Board of the Huntington’s Study Group. She declares no conflicts of interest. J. S. Paulsen currently has research grants from the NIH; she is also supported by grant funding from NIH, NINDS, and CHDI; she declares no conflicts of interest. M. K. McCormack currently has grants from the NJ Department of Health; he declares no conflicts of interest. D. Cella receives grant funding from the National Institutes of Health and reports that he has no conflicts of interest. M. A. Nance currently has funding from the NIH, HDSA, CHDI, and the Parkinson’s Foundation. She has received research funding in the last 3 years from Teva Pharmaceuticals, Biotie, and Sunovion. She has received honoraria from WebMD, Worrell Inc, Optio Biopharma, and Augsburg College. She declares on conflicts of interest. J.-S. Lai currently has research grants from the NIH and Neurofibromatosis Therapeutic Acceleration Program at John Hopkins University; she declares no conflicts of interest. P. Dayalu currently has research grants from the NIH, Astra-Zeneca, and Vaccinex. He declares no conflicts of interest.
: All data was collected in accordance with the local site institutional review boards.
: Participants provided informed consent prior to study participation.