The HA Research Department would like to thank all of you for being a part of HYDROCEPHALUS RESEARCH!
By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward! This progress was showcased during the recent Hydrocephalus Clinical Research Network (HCRN) meeting held on April 6-7 at Washington University in St. Louis.
Did you fill out a survey asking what your preferences were with questions like, “Would you rather have better cognitive outcomes or less surgeries?” Over 400 of you did! The results of that survey were presented during the HCRN meeting by Dr. Mandeep Tamber from the Children’s Hospital of Pittsburgh. Some interesting results of the survey showed that caregivers and patients can have very different opinions about what risk-benefit tradeoffs they are willing to take when it comes to treatments for hydrocephalus. Dr. Tamber is now moving this research forward with the hopes of helping newly diagnosed patients through this decision making process.
Using data from patients at participating HCRN sites, the pilot study, “Endoscopic Third Ventriculostomy with Choroid Plexus Coagulation (ETV/CPC),” is now complete. With those results in hand, HCRN Investigators and HA are now in discussions with the National Institutes of Health to determine the best route to apply for funding to conduct a randomized control trial. The trial would randomly assign eligible patients to receive either a shunt or the ETV/CPC procedure. The patients would then be followed out over multiple years to test learning, memory, and other cognitive outcomes.
And finally, funded through your donations as part of the Mentored Young Investigator program, the study, “Ventricular Involvement in Neuropsychological Outcomes for Hydrocephalus (VINOH),” is now complete and preliminary results were presented at the meeting. Once published, the results of VINOH will help us understand if ventricle size is related to cognitive outcomes in children who have a shunt or underwent an ETV procedure.
These projects could not move forward without your support and participation. The HCRN has now recorded over 14,000 procedures from 6,395 patients and continues to work with HA to improve the lives of those living with hydrocephalus!