Multidisciplinary team meetings in treatment of spinal muscular atrophy adult patients: a real-life observatory for innovative treatments.

"Declarations Ethics approval and consent to participateThis 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. Consent for publication.Not applicable. Competing interestsESC 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. Competing interests 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."

"Funding This study did not receive any funding."