Transverse Myelitis Study Seeks Pediatric Participants

Transverse Myelitis

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A research study being conducted at University of Texas Southwestern is seeking young participants who have recently been diagnosed with transverse myelitis or acute flaccid myelitis.

The study is being led by Benjamin Greenberg, M.D., MHS, director of the Transverse Myelitis & Neuromyelitis Optica Center at University of Texas Southwestern in Dallas.

Entitled CAPTURE (Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate) is described as “the first to combine assessments from healthcare providers and patients relative to pediatric transverse myelitis (TM) outcomes.” A news announcement about the study said the Transverse Myelitis Association, patients and healthcare facilities throughout North America would be participating.

The researchers are seeking children who have been diagnosed with TM or acute flaccid myelitis and are within 180 days of the initial onset of symptoms. The study will consider participants from birth up to age 18 years (if the teen was age 17 when onset occurred).

“The study is designed to assess the current state of pediatric TM, including acute flaccid myelitis, in terms of diagnosis, treatment and outcomes,” the announcement said. “Ultimately, it will lead to an improved understanding of the current status of care for individuals afflicted with TM and reveal what are the current best practices. Patients will educate clinicians, and the study will educate the broader healthcare system about what outcomes are important and achievable.” The study also seeks to “develop a multi-metric outcome measure based on combined patient-generated and provider-generated data that can be used in future controlled trials.”

Study participants could need to travel to the closest of five participating research centers at three-month, six-month and 12-month intervals, or could enroll in the study’s virtual equivalent. Children will be examined by physicians, and the children and their parents will be asked to complete questionnaires.

For more information, contact Rebecca Whitney at (855) 380-3330, extension 5, rwhitney@myelitis.org, or Tricia Plumb, (214) 456-2464, Patricia.plumb@utsouthwestern.edu.

This article originally appeared in the January 2016 issue of Mobility Management.

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