CAPTURE Study Continues
In 2014, The Transverse Myelitis Association (TMA), now the Siegel Rare Neuroimmune Association (SRNA) and seven clinics across North America, under the direction of Dr. Benjamin Greenberg at UT Southwestern Medical Center, began a research journey to follow pediatric transverse myelitis diagnoses, CAPTURE.
CAPTURE was the first of its kind – a prospective, observational study in pediatric transverse myelitis (TM) and acute flaccid myelitis (AFM). Designed to not only utilize the imaging and clinical diagnosis details from physicians, CAPTURE also collects information from the children and families themselves about their outcomes, relative to the treatments they received. Initially, study criteria required enrollment within three months of diagnosis. After listening to feedback from SRNA and the parent community, Dr. Greenberg and his team changed the study’s enrollment to include patients who are within six months of diagnosis.
CAPTURE, through the work of the SRNA and Dr. Greenberg’s team in Dallas, has been able to move forward and is still continuing to enroll new participants with TM and AFM within six months of diagnosis through our online cohort. This is incredible considering that when we began, the study was scheduled to end recruitment in 2018. The more information we can obtain, the clearer the path forward becomes – how we develop treatments and therapies, engage potential stakeholders, including government officials and entities, and ultimately, provide the best outcomes for children, or better yet, stop TM and AFM from even being a threat to our children. Even more incredible is the fact that recent IRB changes to CAPTURE will allow us to continue to hear from those children and families previously enrolled, should they so choose, through 2026!
CAPTURE must and will continue for our children. We will continue to enroll those newly diagnosed within six months and into the long-term study. If you or your child has been recently diagnosed or you’ve participated in CAPTURE and wish to extend your participation, please contact Tricia Plumb or Rebecca Whitney.
Oftentimes over the last few years, we’ve been contacted by families further out from six months, even years post-diagnosis, and have heard, “What about my child? What about their experience and her recovery?” If you or your child were diagnosed with TM or AFM more than six months ago, your story, your recovery, your outcomes matter, too! A study called CORE TM is available and currently enrolling participants, and it is similar to CAPTURE. For more information about CORE TM or to enroll, please do so via the SRNA Registry.