The Patient Voice in Hydrocephalus Research Studies

Hydrocephalus Association ConferenceLast month, the Hydrocephalus Clinical Research Network (HCRN) began enrolling patients for the study, A Randomized Controlled Trial of Anterior Versus Posterior Entry Site for Cerebrospinal Fluid Shunt Insertion (a.k.a. The CSF Shunt Entry Site Study). The study will look at shunt entry points in both the anterior (front/top) and posterior (back) areas of the brain. The goal is to determine if either entry point decreases the need for repeated brain surgeries due to device failure.  Dr. William Whitehead of Texas Children’s Hospital and Baylor College of Medicine, a principal investigator for the HCRN, developed and will oversee the trial which will accrue patients at all nine HCRN-participating pediatric hospitals.

The hydrocephalus community has been involved with this study from the start, and HA thanks those of you who responded to our research survey in late April of 2014. In order to maintain patient and caregiver involvement in the study, the Hydrocephalus Association developed a Patient Partner Committee (PPC) to provide the patient perspective throughout the duration of the study.

The PPC consists of ten parents, four adults with hydrocephalus, and one HA staff member. The PPC kick-off meeting was held in October of 2014 in order to introduce the members to the study and gain initial feedback. Since then, the PPC has reviewed consent forms and provided feedback for the new CSF Shunt Entry Site Study page on the HA and HCRN websites. The PPC will continue to remain engaged throughout the study, with members sitting on both the study Steering and Investigator Committees. Once the study is over and the results are in, the PPC will help determine how best to communicate the findings with our whole community.

If you want to stay involved, keep visiting the CSF Shunt Entry Site page for continued updates on our progress!

This study was funded through the Patient Centered Research Outcomes Institute (PCORI).