Salort-Campana, Emmanuelle http://orcid.org/0000-0002-1846-3017
Solé, Guilhem
Magot, Armelle
Tard, Céline
Noury, Jean-Baptiste
Behin, Anthony
De La Cruz, Elisa
Boyer, François
Lefeuvre, Claire
Masingue, Marion
Debergé, Louise
Finet, Armelle
Brison, Mélanie
Spinazzi, Marco
Pegat, Antoine
Sacconi, Sabrina
Malfatti, Edoardo
Choumert, Ariane
Bellance, Rémi
Bedat-Millet, Anne-Laure
Feasson, Léonard
Vuillerot, Carole
Jacquin-Piques, Agnès
Michaud, Maud
Pereon, Yann
Stojkovic, Tanya
Laforêt, Pascal
Attarian, Shahram
Cintas, Pascal
Article History
Received: 13 August 2023
Accepted: 19 December 2023
First Online: 24 January 2024
Declarations
:
: This study was classified as a service evaluation, and therefore, no formal research ethics committee approval was needed. However, the study was conducted according to research governance guidance and in compliance with the Declaration of Helsinki; that is, participants in the focus groups were given written and verbal information and time to ask questions prior to participation. They were assured of anonymity; participation was implicit of consent. All data from this study are anonymized and stripped of all sensitive personal and patient identifiers.
: Not applicable.
: ESC received honoraria for advisory boards and speaking at educational events for Biogen, Argenx, UCB, Sanofi-Aventis, Roche, Lupin. GS received funding from BIOGEN FRANCE SAS to attend two medical meetings in the last 5 years. AM reports no disclosures. CT reports personal fees and non-financial support from Sanofi-Genzyme, personal fees and non-financial support from Amicus, personal fees from Akcea, personal fees and non-financial support from Pfizer, personal fees and non-financial support from Alnylam, personal fees from Ultragenyx, personal fees from Biogen, non-financial support from Santhera, non-financial support from LFB, personal fees from Argenx, personal fees and non-financial support from UCB, outside the presented work. J-BN reports travel grants from Biogen and Roche. AB reports no disclosures. EDLC has received financial support for attending meetings and/or travel from Biogen, Sanofi-Aventis. FB reports no disclosures. CL reports no disclosures. Masingue Marion reports no disclosures. LD reports honoraria for participation to an advisory board of Biogen. AF reports honoraria for lectures for Biogen. MB reports no disclosures. MS reports no disclosures. AP reports no disclosures. SS reports payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events Lupin, fulcrum; support for attending meetings and/or travel UCB Pharma, SANOFI, BIOGEN, FULCRUM THERAPEUTICS, participation on a Data Safety Monitoring Board or Advisory Board SANOFI,BIOGEN,AMICUS,UCB Pharma, ALEXION EM reports no disclosures. AC reports no disclosures. RB reports no disclosures. LF has received financial support from Biogen, Sanofi-Aventis, Roche, Lupin, LFB, Santhera, for its participation in conferences and educational events. CV reports consultancies for Roche, Novartis GT, Biogen, IPSEN and Sarepta and has been primary investigator for Roche, Novartis GT and PTCA J-P reports no disclosures. Michaud Maud reports no disclosures. YP reports consultancies, participation to advisory board and clinical trials with Avexis, Biogen, Novartis, Roche. TS reports participation to advisory boards and lectures with Roche and Biogen. PL received honoraria for advisory boards and speaking at educational events for Biogen and Roche. SA reports participation to advisory boards and lectures with Biogen and Roche. PC received honoraria for advisory boards and speaking at educational events for Biogen, Argenx, UCB, Sanofi-Aventis, Roche, Lupin, LFB, Alnylam.