CAPTURE: Collaborative Assessment of Pediatric Transverse Myelitis; Understand, Reveal, Educate

Principal Investigator: Benjamin Greenberg, MD, MHS

Study Site: University of Texas Southwestern & Children’s Medical Center, Dallas, TX

Clinical Trials.Gov Identifier: NCT02144935

CAPTURE: Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate, is an innovative, multi-center, pediatric transverse myelitis study led by Dr. Benjamin Greenberg, MD, MHS, Director of the TM and NMO Center at UTSW in Dallas, TX. The study is the first to combine assessments from health care providers and patients relative to pediatric TM outcomes. The collaboration involves multiple health care centers across North America, the Transverse Myelitis Association and most importantly, patients. The study is designed to assess the current state of Pediatric Transverse Myelitis (TM) and Acute Flaccid Myelitis (AFM) in terms of diagnosis, treatment, and long-term outcomes. 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 health care system about what outcomes are important and achievable. It will develop a multi-metric outcome measure based on combined patient generated and provider generated data that can be used in future controlled trials. Participation is online only. It includes a survey at 3 (if able), 6, and 12 months after diagnosis, and continuing long term every 4 months until the year 2026. Accompanying each 4 month survey, a secure telemedicine portal will be utilized to assess the child’s mobility, and will also include a short functional survey. The study will also include a review of treatment records, and imaging. Internet access is required for completion of questionnaires, surveys, and the telemedicine portal by the child and/or parents.