Building a Texas-based center for neuroblastoma clinical research.

Project Goal

The funding provided initial support for developing a neuroblastoma referral center.

Results

We now get more referrals for children with neuroblastoma than any other program in the Southwest.

For our patients with neuroblastoma, we have been able to support the development of multiple clinical trials, including both local investigator–initiated trials and collaborative multi-institutional trials.

Impact

For neuroblastoma patients, the structure proposed in our ALSF infrastructure grant had a significant impact on the referral process for patients coming to the Texas Children’s Cancer Center (TCCC), and it has since been adopted for all patients with Solid Tumors and Brain Tumors. For children wishing to come to TCCC for a new diagnosis or for a second opinion during or after therapy, they have an easy-to-reach liaison to help them navigate the referral and transfer process, easing an otherwise very stressful period of time.

We were able to provide these services to meet the needs of our neuroblastoma patients and their families by helping them efficiently navigate a complicated health care system. The additional support allowed us to streamline our interactions with patients and with referring physicians, allowing appropriate treatment to be started more quickly and efficiently.

Next Steps

We are embarking, together with Texas Children’s Hospital, on a strategy to use social media to help form connections with neuroblastoma patients and inform them of potential treatment options and of current and upcoming clinical trials.