Contributions
Abstract: EP1327
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Paediatric MS
Aim: Since 2013, clinical trials in pediatric multiple sclerosis (pMS) have emerged and patient recruitment in this rare disease was challenging. Understanding the limiting factors, for both parents and children, to participate in these clinical trials would help to desgin better trials in the future.
Methods: Children with pMS and their parents, who had been approached to participate in a clinical trial, were asked to complete an anonymous survey. They were either followed in Bicêtre Hospital, France or the Birmingham Children's Hospital, United Kingdom.
Results: The survey was proposed to 90 persons and 58 responded, 35 parents and 23 children. 33 responders (11 children, 22 parents) had not participated in a clinical trial. In this 'non-pariticipant” group, the main concerns for parents were school absence (50%) and the risk of being on placebo (55%), and only 19% of children expressed difficulties in participating in clinical studies. In that group, more than 72% of children and 45% of parents were willing to participate in a future clinical trial.
25 responders (12 children, 13 parents) had participated in a clinical trial. The main concerns for parents and children were the number of visits (54% and 50%) and school absence (46% and 50%). Interestingly, for children, the number of blood samplings (75%), blinding for treatment (67%) and getting injections (58%) were not limitations In this group 50% of children and 85% of parents were ready to participate again in a clinical trial.
Conclusion: The main concerns for parents and children are the frequency of visits and missing school during a clinical trial. Interestingly, children are more willing to participate in clinical trials than their parents and the opposite is true after having participated. Children and parents suggested to do blood tests at home, less visits and not during the school days. Future clinical trials may need to be adapted according to their wishes.
Disclosure: Evangeline Wassmer has served as a consultant for Novartis and Biogen, She is an investigator in trials with Biogen Idec, Sanofi and Novartis. Her MS research projects have been funded by the UK MS Society, Action Medical Research and Birmingham Children's Hospital Research Foundation
Kumaran Deiva is an investigator in trials with Novartis, Sanofi and Biogen and received consultancy fees from Biogen, Novartis, Sanofi.
Justine Marie dit Calais: nothing to disclose
Yayhia Debza: nothing to disclose
Carole Leroy: nothing to disclose
Hélène Maurey: nothing to disclose
Abstract: EP1327
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Paediatric MS
Aim: Since 2013, clinical trials in pediatric multiple sclerosis (pMS) have emerged and patient recruitment in this rare disease was challenging. Understanding the limiting factors, for both parents and children, to participate in these clinical trials would help to desgin better trials in the future.
Methods: Children with pMS and their parents, who had been approached to participate in a clinical trial, were asked to complete an anonymous survey. They were either followed in Bicêtre Hospital, France or the Birmingham Children's Hospital, United Kingdom.
Results: The survey was proposed to 90 persons and 58 responded, 35 parents and 23 children. 33 responders (11 children, 22 parents) had not participated in a clinical trial. In this 'non-pariticipant” group, the main concerns for parents were school absence (50%) and the risk of being on placebo (55%), and only 19% of children expressed difficulties in participating in clinical studies. In that group, more than 72% of children and 45% of parents were willing to participate in a future clinical trial.
25 responders (12 children, 13 parents) had participated in a clinical trial. The main concerns for parents and children were the number of visits (54% and 50%) and school absence (46% and 50%). Interestingly, for children, the number of blood samplings (75%), blinding for treatment (67%) and getting injections (58%) were not limitations In this group 50% of children and 85% of parents were ready to participate again in a clinical trial.
Conclusion: The main concerns for parents and children are the frequency of visits and missing school during a clinical trial. Interestingly, children are more willing to participate in clinical trials than their parents and the opposite is true after having participated. Children and parents suggested to do blood tests at home, less visits and not during the school days. Future clinical trials may need to be adapted according to their wishes.
Disclosure: Evangeline Wassmer has served as a consultant for Novartis and Biogen, She is an investigator in trials with Biogen Idec, Sanofi and Novartis. Her MS research projects have been funded by the UK MS Society, Action Medical Research and Birmingham Children's Hospital Research Foundation
Kumaran Deiva is an investigator in trials with Novartis, Sanofi and Biogen and received consultancy fees from Biogen, Novartis, Sanofi.
Justine Marie dit Calais: nothing to disclose
Yayhia Debza: nothing to disclose
Carole Leroy: nothing to disclose
Hélène Maurey: nothing to disclose