Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]
Official Title: Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate or CAPTURE Study
Brief Summary:
Patients and families are invited to participate in an online registry and data repository specifically for patients with transverse myelitis. Their options are to join the data repository only, or participate in a clinical sub study in conjunction with the database repository. The data generated in this study will come from surveys, interviews, review of medical records, and physical examinations.
Data from this study will be utilized to guide future clinical trials for children with an acute case of Transverse Myelitis. Parents and children separately will fill out an online data base with 7 banks of surveys, each bank of survey topics have 7-10 questions. We will have both the parent and child fill out at time of symptom onset, and three time points to follow, 3, 6, and 12 months post symptom onset.
A small subset of patients filling out the data registry will be able to travel to 1 of 5 treating TM centers; Children's Medical Center Dallas, Children's Hospital of Philadelphia, Hospital for Sick Children (Toronto, CA), Kennedy Krieger Institute, or Johns Hopkins University in Baltimore, MD for a physical examination highlighting recovery from Transverse Myelitis.