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

The Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate or CAPTURE study is the first large-scale international study of pediatric transverse myelitis. Funded by the Patient Centered Outcomes Research Institute (PCORI), this study is the first of its kind to track the outcomes of pediatric TM patients. Identifying how patients respond to various acute therapies is critically important for several reasons. First, determining the responses to different treatment regimens may identify which treatments work best for which patients. Secondly, determining the outcomes among patients is vitally important for understanding the needs of our patients relative to restoration of function. A number of companies have developed therapeutic options for repairing damage to spinal cords, but are targeting conditions such as traumatic injury and multiple sclerosis. With the right outcomes data, we could make TM an ideal condition in which biotech companies could invest. This would create tremendous opportunities for our patient community.

We need the help of our community of patients, caregivers and medical professionals to succeed. While some patients will be evaluated at one of the five participating centers (UT Southwestern, Johns Hopkins, Kennedy Krieger Institute, Children’s Hospital of Philadelphia and Toronto Hospital for Sick Children), we are seeking over 100 patients to be followed via electronic surveys. We are asking for patients and families to log in to a website and answer questions about their condition. The first data collection has to occur within 3 months of the onset of symptoms. Thus, we are asking for your help! As you are introduced to families who are in the midst of a new TM diagnosis, please refer them to SRNA website (https://wearesrna.org/research/clinical-studies-trials) and Rebecca Whitney ([email protected] // 1-855-380-3330 ext 5). We are looking for you to help families understand the importance of this study and help us meet our recruitment goals.

~ Benjamin Greenberg, Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs