By Rebecca Whitney, Pediatric Programs Manager at SRNA
In 2014, the Transverse Myelitis 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. I honestly didn’t know what to expect from this new venture, having previously only been on the participation end of a research study, but knew in my heart of hearts that this study, CAPTURE, was incredibly valuable and would make an impact in the history of our children and families. I was ready to be a part of it, although it was difficult, often heartbreaking work. But, that’s also why I knew I needed to be a part of it. It is a matter of my heart and means something so incredibly personal to me as a parent of a young child diagnosed with transverse myelitis.
CAPTURE is 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 parent community, Dr. Greenberg and his team changed the study’s enrollment to include patients who are within six months of diagnosis. Even for the most well-intentioned families vowing to help by participating in a research study, those first three months post-diagnosis are oftentimes so bewildering and surreal. We found we experienced a better enrollment rate and continued participation if we allowed families time to adjust to this new realm of medicine they suddenly found themselves in.
2014 also brought to light a “new variant” of TM that was popping up across the country – Acute Flaccid Myelitis or AFM. Due to the outbreaks of AFM, we found our correspondence with families and enrollment were increasingly with those experiencing AFM rather than TM. Regardless, the study remained open for both diagnoses, and we have continued to learn so much, often debated amongst clinicians and governmental entities, about the acute treatments that might provide the best outcomes for our children. CAPTURE has been and continues to be a critical part of the conversation and debate regarding acute treatments as it is an already established mechanism for collecting essential data and follows children’s progress for up to a year after their diagnosis. To date, we have enrolled 140 children into CAPTURE.
CAPTURE, through the work of 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 way we move 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!
Let’s think about this for a moment… By following current and future enrollees in CAPTURE through 2026, we will have 10 years – a decade – of real, patient-reported data. For some, this means when they report their recovery and outcomes, we will follow them into adulthood. We all know how quickly children grow and quite frankly, a diagnosis of a rare neuroimmune disorder can be starkly different for a child than an adult, including their recovery. What an excellent opportunity to impact change and the future of medicine related to these disorders! As it stands right now, we can’t refer back to medical literature or history books and find what is to be done for a child amid an AFM outbreak. The potential for learning from our heart-wrenching experiences is astounding. As I sit here and watch my own child recover from major surgery as a result of his TM diagnosis, now almost 12 years out, how he’s doing today looks so different than what we thought or imagined 5 or 10 years ago, or even six months post-diagnosis. Since we are forced to face this diagnosis and the ramifications of what it means for his well-being, his growth, his mobility, his quality of life, then we are going to learn and grow from it, and hopefully, we can help other children and families as we do.
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. Those who were previously enrolled in CAPTURE will be contacted by Tricia Plumb of UTSW to see if they wish to extend their participation. I hope that each one of the 140 participants to date will consider the impact they may have on our community and future children by continuing to share their stories via the brief surveys. The aim is for each child/family to complete a survey and have a short, secure video chat with the study leader(s) every 4 months. 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 me.
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 her experience and her recovery?” If you or your child were diagnosed with TM or AFM before six months ago, your story, your recovery, your outcomes matter, too! A new 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. You may also contact Tricia Plumb or me for more information.
For families of children diagnosed with Acute Disseminated Encephalomyelitis (ADEM) or whose diagnosis may have changed from TM to ADEM and are no longer eligible for CAPTURE, there is the possibility for study participation for you, too. APERTURE is currently enrolling and is also an observational study being conducted online. For more information on APERTURE, please contact me, Tricia Plumb, or Dr. Cynthia Wang.
Further to the opportunities noted above, the SRNA Registry is always available, and everyone with a rare neuroimmune disorder is invited to participate in the registry.