PPMD Receives Award to Improve Neurobehavioral Care in Duchenne

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by Diana Campelo Delgado |

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Parent Project Muscular Dystrophy (PPMD) has received an award of more than $100,000 from the Duchenne Research Fund to address neurobehavioral care in people with Duchenne muscular dystrophy (DMD).

“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,” Sarah Shelley, MD, medical trustee at the Duchenne Research Fund, said in a press release.

Patients with DMD may experience neurobehavioral issues affecting learning, anxiety and behavior, which are made more problematic by the difficult and uneven access to screening and care.

“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,” said Rachel Schrader, vice president of clinical care and education at PPMD.

Inserted in PPMD’s new Brain Initiative, the award will help understanding and improve the diagnosis and therapies for neurobehavioral issues in DMD patients.

“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,” Schrader added.

Partnering with multiple Certified Duchene Care Centers, PPMD’s project will assess new and emerging knowledge in neurobehavioral issues, evaluate the care experiences of both clinicians and caregivers, and pilot a new tool for an easy analysis of neurobehavioral conditions, aimed at better detection, diagnosis and treatment.

This tool was developed by Natalie Truba, PhD, from the Nationwide Children’s Hospital, and Molly Colvin, PhD, at Massachusetts General Hospital. It will be introduced at Arkansas Children’s Hospital under the supervision of Seth Sorensen, PhD, and Aravindhan Veerapandiyan, MD.

The goal is to test its validity and utility in different populations, including urban, suburban, and international settings. Collectively, these efforts are intended to help reach consensus about care, learning issues, behavior, depression and anxiety experienced by people with DMD.

PPMD’s Brain Initiative also will look into standardization of neurobehavioral diagnostics and interventions to ensure all patients can access this type of care.

“We look forward to following the progress of PPMD’s work in the assessment and care of neurobehavioral diagnoses in Duchenne,” Shelley said.

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