Skrobanski, Hanna
Vyas, Kishan
Bowditch, Sally http://orcid.org/0000-0002-6918-2936
Hubig, Lena
Dziadulewicz, Edward
Fish, Louise
Takhar, Pooja
Lo, Siu Hing
Funding for this research was provided by:
GW Pharmaceuticals, now a part of Jazz Pharmaceuticals, Inc.
Article History
Accepted: 5 January 2023
First Online: 9 February 2023
Declarations
:
: This study was funded by GW Pharmaceuticals, now a part of Jazz Pharmaceuticals, Inc.
: All authors met the International Committee of Medical Journal Editors (ICMJE) authorship criteria and had full access to relevant data. Neither honoraria nor payments were made for authorship. Sally Bowditch, Edward Dziadulewicz, and Kishan Vyas are employees of Jazz Pharmaceuticals, Inc. Sally Bowditch and Edward Dziadulewicz hold stock/stock options in Jazz Pharmaceuticals, Inc. Hanna Skrobanski, Lena Hubig, and Siu Hing Lo are employees of Acaster Lloyd Consulting Ltd, which received payment from GW Pharmaceuticals, now a part of Jazz Pharmaceuticals, Inc., in the conduct of this study. Louise Fish is an employee of Genetic Alliance UK and was an employee of the Tuberous Sclerosis Association (TSA) when the study was conducted, and Pooja Takhar is an employee of the TSA; the TSA has received sponsorship for events, an unrestricted educational grant, and consulting fees from GW Pharmaceuticals, now a part of Jazz Pharmaceuticals, Inc.
: This study received ethical approval from the WIRB-Copernicus Group Independent Review Board (tracking number: 20211736).
: All participants provided informed, written consent prior to participating in the survey, which included consent for participation in the survey and for anonymous data to be used in future publications.
: All relevant data are provided with the manuscript and supporting files. Jazz has established a process to review requests from qualified external researchers for data from Jazz-sponsored clinical trials in a responsible manner that includes protecting patient privacy, assurance of data security and integrity, and furthering scientific and medical innovation. Additional details on Jazz Pharmaceuticals’ data-sharing criteria and process for requesting access can be found at: ExternalRef removed.
: Not applicable.
: HS and SHL contributed to the conception/design of the study. All authors contributed to the acquisition, analysis, or interpretation of data. All authors drafted or critically revised the manuscript for important intellectual content and approved the final version to be published. All authors agree to be accountable for all aspects of the work.