AHCRN Registry: Characterizing Patient Populations in the Adult Hydrocephalus Clinical Research Network (AHCRN)
Brief description of study
The AHCRN Registry has been developed to obtain data about hydrocephalus patient events, treatments and outcomes from the network Clinical Centers, and to create a database to be used by AHCRN investigators. The ongoing maintenance of the Registry serves two main purposes: (1) it will help investigators understand the variability, progression, and current treatment practices for hydrocephalus in adults, with an ultimate goal of better guiding and assessing therapeutic intervention and providing recommendations on patient care and; (2) it will provide pilot and descriptive data necessary for hypothesis generation and study design (e.g., preliminary power analyses, recruitment projections) for studies under development by the AHCRN. This multi- institutional database will be useful for tracking trends in hydrocephalus over time. The Registry will be an invaluable resource to the AHCRN and will help stimulate new research protocols, identify potential need for future expansion of the network to incorporate additional patient populations, and provide a descriptive understanding of adults with hydrocephalus cared for within the network.
If you are registered as a volunteer, please log in to contact the study team/express interest in this study.