Willgoss, Tom
Cassater, Daiana
Connor, Siobhan
Krishnan, Michelle L.
Miller, Meghan T.
Dias-Barbosa, Carla
Phillips, Dawn
McCormack, Julie
Bird, Lynne M.
Burdine, Rebecca D.
Claridge, Sharon
Bichell, Terry Jo
Funding for this research was provided by:
F. Hoffmann-La Roche
Article History
First Online: 2 September 2020
Compliance with Ethical Standards
:
: Tom Willgoss and Siobhan Connor are employees and shareholders of Roche. Daiana Cassater is an employee of Roche. Michelle L. Krishnan and Meghan T. Miller were employees of Roche at the time of writing. Dawn Phillips and Sharon Claridge declared no conflicts of interest. Carla Dias Barbosa and Julie McCormack are employees of Evidera, which provides consulting and other research services to pharmaceutical, device, government, and non-government organizations. As Evidera employees, they work with a variety of companies and organizations and are expressly prohibited from receiving any personal payment or honoraria directly from these organizations for services rendered. Lynne M. Bird has received research support from Ovid Therapeutics, Inc. to conduct clinical trials, research support from F. Hoffman-La Roche to provide data from the Angelman syndrome natural history study, research support from F. Hoffman-La Roche/Genentech to conduct clinical trials, research support from FDA (via subcontract through Boston Children’s Hospital) to conduct natural history study, and honoraria support from Ionis Pharmaceuticals to participate in Scientific Advisory Board. Rebecca Burdine is a clinical trial steering committee member for Ovid Therapeutics, and a Board and SAB member of Angelman Syndrome Foundation. Terry Jo Bichell contributes to the Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders, Nashville TN.ExternalRef removed, including a former affiliation with Angelman Biomarkers and Outcome Measures Alliance.
: For the interviews performed, all procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation and with the Helsinki Declaration of 1964, as revised in 2013. Ethical approval was obtained from the relevant IRBs in each country (ethics approval codes: study number 18000-01 and MEC-2018-084).
: Written consent was obtained from participants. Informed consent was obtained from all individual participants included in the study.