Parent Project Muscular Dystrophy (PPMD) announces a $100,000 sponsorship from the Duchenne Research Fund as part of PPMD’s new Brain Initiative.
The award will support work in understanding and improving the experiences and barriers to obtaining diagnostic and therapeutic care for neurobehavioral conditions in Duchenne, PPMD notes in a media release.
In partnership with several Certified Duchenne Care Centers (CDCCs), PPMD will launch a project evaluating several facets of neurobehavioral care including an assessment of new and emerging knowledge around the care and treatment of neurobehavioral diagnoses in Duchenne, experiences and pathways for care from both the clinician and caregiver perspective, and pilot of a new tool to more easily assess for the presence of neurobehavioral conditions, facilitating efficient detection, diagnosis, and treatment of conditions.
The neurobehavioral tool, developed by Natalie Truba, PhD, of Nationwide Children’s Hospital, and Molly Colvin, PhD, of Massachusetts General Hospital, will be piloted at Arkansas Children’s Hospital under guidance of Seth Sorensen PhD and Aravindhan Veerapandiyan, MD, with a goal of rolling out use of the tool to additional sites in urban, suburban, and international settings to better understand its utility and validity across a variety of populations.
Each of these efforts will collectively inform a series of care meetings diving into practices with a goal of establishing consensus for care across learning, behavior, depression, and anxiety in Duchenne, the release explains.
“We recognize that while there have been expansive advancements in routine clinical care alongside development of four approved therapies for the treatment of Duchenne, access to timely diagnosis and treatment for neurobehavioral conditions in Duchenne remains challenging. By optimizing routine clinical care, problems with learning, behavior, depression, and anxiety have bubbled to the surface, but how we address these issues remains inconsistent and difficult to treat.
“We are optimistic that this new initiative will help move the needle in how we tackle these important issues that affect everyday life for people living with Duchenne. We recognize there is much work that needs to be done in this arena, and we are excited to push forward in optimizing this area of care for the Duchenne community.”
— Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education
“We are pleased that the Duchenne Research Fund has partnered with PPMD to support this vital research and tackle an under-explored aspect of Duchenne muscular dystrophy. Our charity is committed to funding research to improve the lives of everyone living with Duchenne. We look forward to following the progress of PPMD’s work in the assessment and care of neurobehavioral diagnoses in Duchenne.”
— Dr. Sarah Shelley, medical trustee at the Duchenne Research Fund
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]
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