The second GrowDMD Consortium meeting took place on 11th-13th October in Milan, hosted by the team Istituto Neurologico “Carlo Besta”. Partners shared progress on their work to date, including the systematic review of existing scientific evidence about transition in DMD, and preparations for the main phase of data collection in the project. On the afternoon of 12th there was a round-table on transition, with guest speakers including Gundula Ernst (Hannover, Germany), Lorenzo Maggi (Milan, Italy), Sergio Buja (Ferrara, Italy) and Jan Willem Gorter (Utrecht, Netherlands) who talked about the importance of a multidisciplinary approach to transition; and Marco Rasconi, chair of the Unione Italiana lotta alla distrofia musculare, who emphasised the importance of combatting social barriers faced by young people [www.uildm.org].
The meeting came at an important moment, offering an opportunity to reflect on how people living with DMD can be actively involved in all stages of the research process.
One aspect of this is by making their voices heard in the research itself. In early 2024, people living with DMD and their families will be invited to take part in interviews and surveys about their experiences of transition. Please watch out for calls for participation in interviews and surveys, which will be distributed in early 2024, and have your say – more information will be distributed in the coming months.
However, we also aim to make participation in research more holistic: through enabling young people with DMD to contribute to the design of the research itself through creating vignettes about their experiences; and through the creation of a patient advisory board, facilitated by the patient organisations. Please get in touch with our team on zkj.growdmd@uniklinik-freiburg.de if you are interested in taking part in the patient advisory board.
We would like to thank the team at Besta for being such wonderful hosts, and giving us not only perfect surroundings for our work, but also ensuring we caught a glimpse of Milan’s architectural and culinary beauty. Grazie mille and arrividerci to the Besta team – and „à bientôt“ in Montreal October 2024!
