The Children’s Tumor Foundation award will support research needed to design future clinical trials to improve treatment of scoliosis in children with Neurofibromatosis Type 1
DALLAS (Nov. 4, 2026) — Scottish Rite for Children received a $200,000 Clinical Research Award from the Children’s Tumor Foundation (CTF) to advance understanding of scoliosis associated with Neurofibromatosis Type 1 (NF1) and generate the evidence needed to design future clinical trials.
The Children’s Tumor Foundation awarded the grant to principal investigator Jonathan J. Rios, Ph.D., director of Molecular Genetics at Scottish Rite for Children and associate professor at UT Southwestern Medical Center’s (UTSW) Eugene McDermott Center for Human Growth and Development. Rios will lead a multicenter research team that includes investigators from Children’s Medical Center Dallas, Cincinnati Children’s Hospital Medical Center, Mayo Clinic and UTSW.
Unlike the more common adolescent idiopathic scoliosis, which can often be managed with bracing, scoliosis in children with NF1 can progress rapidly despite bracing and is more likely to require surgery. Physicians currently lack sufficient evidence to predict which children with NF1-associated scoliosis are most likely to experience rapid curve progression or how best to measure whether new treatments are effective.
“Skeletal complications affect a significant proportion of children with NF1 and can require more complex surgical intervention,” Rios said. “Yet, scoliosis remains one of the least understood skeletal manifestations of NF1.”
During the two-year award period, the multicenter research team will analyze longitudinal patient data to identify factors associated with scoliosis progression in children with NF1. The team will also evaluate the feasibility of conducting interventional clinical trials and determine appropriate measures of treatment success for future clinical trials.
“Before we can test promising new therapies, we need to know which children are most likely to benefit and how we should define treatment success,” Rios said. “This could mean slowing the progression of the scoliosis, delaying surgery or preventing the need for surgery altogether. This study is an important step toward answering those questions.”
The award reflects the Children’s Tumor Foundation’s focus on translating research into better treatment options for patients with NF1.
“CTF is supporting this research because NF1-associated scoliosis should be a treatable problem, not a complication we simply learn to manage,” said Annette Bakker, Ph.D., CEO of the Children’s Tumor Foundation. “To get there, we need the evidence to understand who is most at risk, when to intervene and how to measure whether a treatment is working. We are investing in this study so researchers can move faster toward clinical trials and bring better treatment options to children with NF1.”
For Scottish Rite, the award represents another opportunity to translate its research expertise into advances in pediatric orthopedic care.
“At Scottish Rite, our physicians and scientists have spent decades working to better understand complex pediatric orthopedic conditions and improve treatment for children,” said Robert L. Walker, president and CEO of Scottish Rite for Children. “This research brings together Scottish Rite’s clinical expertise, scientific capabilities and collaborative partnerships to address important unanswered questions in the care of children with NF1-associated scoliosis. The knowledge gained through this study will move the field closer to clinical trials and ultimately, better treatment options for children and families.”