HCRN Core Data Project: Characterizing Patient Populations in the Hydrocephalus Clinical Research Network (HCRN)

This project aims to collect information about every child aged 18 or younger, from birth up to their 18th birthday, who has surgery for hydrocephalus at one of the participating hospitals. It doesn't matter what type of hydrocephalus surgery they've had, as long as it's directly related to treating their hydrocephalus.

This includes a wide range of procedures like having a shunt inserted (ventriculoperitoneal, ventriculoatrial, lumboperitoneal, etc.), or having a device like an Ommaya reservoir or ventricular access device placed. Even if a child had a shunt replaced after an infection or during another operation, that information would be included.

However, some temporary procedures, like placing a temporary drain outside the body to manage cerebrospinal fluid, are not included in this particular database. The project wants to focus on more permanent surgical treatments for hydrocephalus.

If your child's hospital is part of the Hydrocephalus Clinical Research Network (HCRN), information about their hydrocephalus surgery will be collected. This is an observational study, meaning researchers will gather existing medical data from their records. Your child won't need extra hospital visits, tests, or medication specifically for this project. They will continue to receive their standard care as decided by their medical team. The patient data gathered is anonymous and helps researchers understand the condition better over time.