Gomes, Aparna http://orcid.org/0000-0003-4498-8201
Cook, Keziah
Wong, Alex
Tuttle, Edward
Stratton, A.
Sanders, Rebecca
Funding for this research was provided by:
Amryt Pharmaceuticals, DAC
Article History
Accepted: 14 March 2021
First Online: 11 April 2021
Declarations
:
: This study was funded by Aegerion Pharmaceuticals Inc. (a wholly owned subsidiary of Amryt Pharmaceuticals) and Amryt Pharmaceuticals.
: Aparna Gomes, Keziah Cook, Alex Wong, and Edward Tuttle are employees of Analysis Group, Inc., which has received consultancy fees. Rebecca Sanders is the Co-Founder and Chair of Lipodystrophy UK. Andra Stratton is the Co-Founder and President of Lipodystrophy United.
: The New England Independent Review Board reviewed the study protocol and discussion guide prior to granting an exemption from formal institutional review board review and approval as this study only involves the use of educational tests (cognitive, diagnostic, aptitude, achievement), survey procedures, and interview procedures and information was not recorded in such a manner that human subjects can be identified. UK National Health Service Research Ethics Committee approval was not required for participants located in England.
: Verbal informed consent was obtained from all individual participants included in the study prior to the interviews.
: Verbal informed consent was obtained from all individual participants to publish non-identifying information collected during the interview.
: Data sharing is not applicable as no datasets were generated or analyzed during the current study. Interview transcripts are not publicly available and will not be shared by the corresponding author to protect participant identities.
: The codebook generated during this study is available from the corresponding author on reasonable request.
: AG, KC, and ET contributed to the study conception and design. ET contributed to material preparation and data collection. RS contributed to reviewing the interview questions during the design phase and recruiting participants from the patient community. Data analysis were performed by AG, KC, and AW. The first draft of the manuscript was written by AG, KC, AW, and ET and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.