Pungor, Katalin http://orcid.org/0000-0003-4679-2050
Lee, Jennifer
Denee, Tom http://orcid.org/0000-0002-0150-2091
Kambarov, Yerkebulan http://orcid.org/0000-0003-0362-8373
Nissinen, Riikka
Ampeh, Kevin
Pellegrini, Marco http://orcid.org/0000-0002-6419-6941
Parmeggiani, Francesco http://orcid.org/0000-0002-9296-0986
Funding for this research was provided by:
Janssen Pharmaceuticals
Article History
Received: 5 April 2024
Accepted: 17 June 2024
First Online: 8 July 2024
Declarations
:
: Katalin Pungor, Jennifer Lee, Tom Denee, and Yerkebulan Kambarov, are employees of Johnson and Johnson. Riikka Nissinen was an employee of Janssen-Cilag Oy at the time of the study and is now an employee of Orion Corporation. Kevin Ampeh is an employee of IQVIA and has a consulting agreement with Johnson and Johnson. Francesco Parmeggiani has received consulting fees from AbbVie, Bayer, Janssen, Novartis, and Roche. Marco Pellegrini has no competing interests to report.
: The EXPLORE XLRP-1 physician survey was compliant with applicable market research regulations, including guidance and best practices offered by the European Society of Marketing and Opinion Research, the European Pharmaceutical Market Research Association, and the British Healthcare Business Intelligence Association, as well as with applicable rules and regulations. The XLRP-1.2 survey was reviewed by the Swedish Ethical Review Authority, which concluded that the study is not conducting any intervention on research subjects or using personal identifiable information as detailed in §4 and §3 of the Swedish Ethical Review Act, respectively. The EXPLORE XLRP-1 survey involved a different patient cohort as it covered different geographies, yet the methodology was identical to EXPLORE XLRP-1.2 and, therefore, ethical review and approval were waived, because the survey did not involve specific new acquisition of patient-level data. Written consent was obtained from the retina specialists and geneticists interviewed; no personal or identifiable patient information was collected.