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 TM (including AFM or Acute Flaccid Myelitis) in terms of diagnosis, treatment and 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. This will also include a review of treatment records, imaging. Internet access is required for completion of questionnaires by the child and/or parents.
Children diagnosed with Transverse Myelitis or Acute Flaccid Myelitis between the ages of 0 to 18 years (or 17 years at onset) within 180 days of the initial onset of symptoms.
University of Texas Southwestern/Children’s Medical Center, Dallas TX (IRB Approved) Principal Investigator: Benjamin Greenberg, MD, MHS Clinical Research Coordinator: Tricia Plumb RN, MSN 5323 Harry Hines Blvd U04.200, Dallas, TX 75390-9036 Phone: (214)456-2464 Email: Patricia.firstname.lastname@example.org