Flurie, Maurice
Converse, Monica
Wassman, E. Robert
LaMoreaux, Brian
Edwards, N. Lawrence
Flowers, Colton
Hernandez, Daniel
Hernandez, Helen W.
Ho, Gary
Parker, Christopher
DeFelice, Christopher
Picone, Maria http://orcid.org/0000-0002-3415-9904
Funding for this research was provided by:
Horizon Therapeutics
Article History
Received: 14 November 2023
Accepted: 29 December 2023
First Online: 22 January 2024
Declarations
:
: Maurice Flurie, Monica Converse, Colton Flowers, and E. Robert Wassman are employees of and own stock options in TREND Community. TREND Community’s clients are pharmaceutical and biotechnology companies including, but not limited to, Horizon Therapeutics, Chiesi Global Rare Disease, Novartis, Harmony Biosciences, and Avadel. Maria Picone and Christopher DeFelice are the owners of and own stock options in TREND Community. Gary Ho is co-CEO of the Gout Support Group of America and received grants from Horizon Therapeutics, plc. Gary Ho is also an employee of and stockholder in TREND Community. Christopher Parker received grants from Horizon Therapeutics and the Alliance for Gout Awareness for the Gout Support Group of America. Christopher Parker is co-CEO of the Gout Support Group of America, is on advisory boards for Horizon Therapeutics and Sobi, and is on a speakers bureau for Horizon Therapeutics. Brian LaMoreaux is an employee of and stockholder in Horizon Therapeutics. Helen W. Hernandez, Daniel Hernandez, and N. Lawrence Edwards declare that they have no competing interests.
: This study was conducted with an exemption granted under 45 CFR § 46.104(d)(2) by the Western Institutional Review Board. The data in this study come from both publicly (Reddit) and privately (Facebook) accessible sources. TREND Community has established trusted partnerships with specific Facebook groups that have graciously granted TREND Community access to their data, which are essential for the research we are presenting aimed at enhancing public understanding of the subject. This collaborative agreement entails the establishment of formal procedures wherein TREND Community is entrusted with the responsibility of ensuring data stewardship, which includes incorporating privacy safeguards. It is important to note that there was no retention of any data that include private usernames or unique identifiers regarding the private Facebook group. Deidentification measures were employed prior to data analysis. Furthermore, this study does not present any individual patient data that would necessitate consent. This study was performed in accordance with the Helsinki Declaration of 1964 and its later amendments.