Earlier this month, PPMD convened experts from across the country in Columbus, Ohio for a two-day workshop focused on the development of care standards for gastrointestinal, urological, and swallowing issues in Duchenne and Becker. 

As part of an overarching effort to update the 2018 care considerations, PPMD’s Care Team was delighted to welcome a multidisciplinary group of physicians and healthcare professionals to tackle difficult questions surrounding this poorly described area of Duchenne care:

• What are the most common gastrointestinal problems facing individuals living with Duchenne and Becker, and what are the best treatments?
• What kinds of urological issues are people experiencing, and how can we help alleviate those concerns?
• How can we best screen for and support difficulty with swallowing? 

Additionally, data was presented from a recent community survey that placed emphasis on what concerns are most prevalent in the community in these areas of care, alongside what families prioritize and find most important in supporting overall quality of life for individuals living with Duchenne and Becker. 

Under the leadership of meeting co-chairs Dr. Kent Williams (gastroenterologist, Nationwide Children’s), Dr. Dan Wood (urologist, Children’s Hospital Colorado), and Kierra Berggren (speech language pathologist, VCU), workshop attendees delved deeply into these topics to work toward establishing a consensus plan on how to offer standardized screening and intervention, as well as identify key areas for future learning. 

Consensus recommendations for care from the workshop will be published alongside a comprehensive update to the care guidelines in 2026. Until then, the PPMD team and clinical experts look forward to sharing updates with the community throughout 2025 to help impact and support clinical care and quality of life now – be on the lookout for more information in the coming months, including at PPMD’s Annual Conference, scheduled for June 19-21, 2025 in Las Vegas, Nevada.