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 in this study may involve travel to one of the five participating centers, whichever is closest to the patient geographically (or enrollment into the virtual cohort if travel is not possible), at 3 month, 6 month, and 12 month intervals. It will include a review of treatment records, imaging, and an examination by a physician. 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/Childrens 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
Children’s Hospital of Philadelphia (IRB Approved) Co- Investigators: Brenda Banwell, MD and Amy Waldman, MD Clinical Research Coordinator: Amy Lavery 3501 Civic Center Blvd, Colket Translational Research Bldg, Rm 10012 Phone: (267)425-2136 or Fax: (215) 590-1771 Email: email@example.com
Kennedy Krieger Institute, Baltimore, MD (IRB Approved) Clinical Research Coordinator: Shannon M. Inches The International Center for Spinal Cord Injury Hugo W. Moser Research at Kennedy Krieger Institute 801 N. Broadway, Room 405 Baltimore, Maryland 21205 http://www.spinalcordrecovery.org/ Office: 443-923-9235 Cell: 410-710-7930 Fax: 443-923-9214 Email: firstname.lastname@example.org
Cincinnati Children’s Medical Center (IRB Approved) Co-investigator: Allen DeSena, MD, MPH Phone: 513-636-4222
Online Participation – open to those not near one of the participating centers. Travel is NOT required for online participation. Download the flyer here. Contact Rebecca Whitney at (855)380-3330 ext 5 or at email@example.com OR Tricia Plumb at (214)456-2464 or via email at Patricia.firstname.lastname@example.org.