Core Data Project
The core data project will collect patient demographics, hydrocephalus etiology, diagnostic information, and surgical and medical management information. This initial data will be used to understand the variability, progression, and current treatment practices for hydrocephalus in adults and inform the development of hypothesis-driven research.
There are 4 major components of the Core Data Project
Demographics and Etiology Core:
Patient demographics and etiology will be collected at the first clinical visit. The baseline etiological data will tell the AHCRN investigators details about how and why you developed hydrocephalus. This visit will also include a detailed medical history to determine what other issues you may be facing. The data will allow correlations to be made across clinical conditions. For instance, this data will answer the question: Do people with hydrocephalus also have cardiovascular health issues? Knowing this type of information can lead to powerful hypothesis-driven studies.
The neurosurgery core records all new shunt placements and revisions as well as endoscopic third ventriculostomy (ETV) procedures. The data recorded includes details about the procedure and why the procedure was performed, shunt specifications and any changes made to the shunt system, and post-operative complications including detailed shunt infection information. Among many uses, this data may be combined with the demographic and etiological data to determine if certain patient populations are at an increased risk of infection or other surgical complications. It will also help establish best clinical practice guidelines for neurosurgeons around the world.
The neurological core data will be collected at each clinical visit. The neurological core will include a physical, questions related to speech and mental acuity, observations of body control during various tasks and how well you sense the environment around you. At this time, you will also be asked about symptoms you are currently experiencing such as headache, gait impairment, urinary incontinence, and memory loss. The neurological core data has many uses. First, it enables us to follow the natural history of the disease. Second, combining the neurosurgery and neurological data will tell us information such as which symptoms improve after shunt surgery or ETV and if there are early signs of impending shunt failure. Data like this can be used to personalize your health care and obtain better outcome.
The neuropsychological core will track cognition and psychological health. The neuropsychological battery includes the Montreal Cognitive Assessment (MOCA), the Symbol Digit Modalities Test (SDMT), the Lawton Instrument of Daily Living Scale (ADL/IADL), and the Beck Depression Inventory-II (BDI-II). The MOCA is designed to test for mild cognitive impairment with memory recall, visuospatial, executive function, attention, and language challenges. The SDMT measures the time to pair abstract symbols with specific numbers. The test requires attention, visuoperceptual processing, working memory and psychomotor speed. The Lawton ADL/IADL assesses independent living skills such as using a telephone, doing laundry, and handling finances. The BDI-II is a multiple choice self-report inventory composed of 21 questions. The questions are related to attitudes and feelings of depression such as hopelessness and guilt and physical symptoms of depression such as weight loss. This data will be used to assess how interventions such as a lumbar puncture or external lumbar drainage affect neuropsychological outcomes.
The image data base will collect and maintain MRI and other scans which can be used to follow structural changes in the brain within a patient, but will also be used in future clinical studies. These studies may assess the success of different treatment options, follow differential progression of the disease in different patient populations, or determine the best option for shunt placement.
The image database is based on the federally funded effort developed by Washington University called XNAT. Images are moved from the various clinical sites, stored temporarily while they are anonymized and then uploaded to the XNAT database at the Data Coordinating Center.
Cerebrospinal Fluid Biobank
The Cerebrospinal Fluid (CSF) collected from patients will be stored in a central biobank and will be available to clinical, translational, and basic researchers. The CSF biobank may be used to study a variety of research questions such as: Can a biomarker distinguish NPH from Alzheimer’s? and Does CSF composition affect shunt survival rates?
- Understanding the natural history and treatment response for adults with previously untreated
- Assessment and treatment of patients with Normal Pressure Hydrocephalus (NPH)
- Reducing complications associated with shunt surgery
- Determine the epidemiology and role for treatment with Endoscopic Third Ventriculostomy (ETV)