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

Status: Completed
Location: See location...
Study Type: Observational [Patient Registry]

Patients and families are invited to participate in an online registry and data repository specifically for patients with transverse myelitis (TM) or acute flaccid myelitis (AFM). The data generated in this study will come from surveys, interviews, review of medical records. Data from this study will be utilized to guide future clinical trials for children with an acute case of TM or AFM. Parents and school aged children will complete an online survey 7 banks of questions. Each bundle of survey topics have 7-10 questions. We will have both the parent and child complete a outcomes based survey within 6 months of diagnosis and invite to participate every 4 months until study end in 2024.

Participation Requirements
Sex: All
Maximum Age: 17
Healthy Volunteers: No

• Diagnosis of transverse myelitis (TM) or acute flaccid myelitis (AFM)

• Patient is within 6 months of symptom onset

• Ability of patent or legal guardian is able to provide informed consent

• Ability of a child 10 or older able to provide assent

• Access to the internet

United States
Time Frame
Start Date: May 2014
Completion Date: August 19, 2022
Target number of participants: 106
myelitis, transverse or acute flaccid myelitis
Observational study with online survey participation highlighting outcomes recovery. The surveys can be completed by the child and parent, or if too young to participate, parent only. The survey asks how the child is doing after hospitalization within 6 months of diagnosis, and every 4 months until study end in 2024.
Leads: University of Texas Southwestern Medical Center
Collaborators: Patient-Centered Outcomes Research Institute

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