Coming Soon: De-Identified Data Access for Qualified Scientists
In the very near future, we expect to launch our Investigator Portal. This section will be reserved for qualified scientists focused on the prevention of, or treatments for, Alzheimer’s, Parkinson’s, Post Traumatic Stress Disorder, Traumatic Brain Injury, and other neurodegenerative disorders.
Those using the Investigator Portal will likely engage with the Brain Health Registry in two ways.
- Analysis of Brain Health Registry data. Some scientists will apply to use the data generated by this project to test existing or new hypotheses related to diagnoses, illness pathways, aging impacts, etc. In these cases, all data would be de-identified. For example, an investigator would be able to see how an individual participant’s brain performance changes over time and may discern patterns between that person’s diet and brain performance – but would have no way of knowing what that individual is. The data set will become particularly useful to these investigations if a large percentage of participants continue returning to the site for regular online neuropsychological tests.
- Recruitment for clinical trials. This project has been designed in order to address major challenges in the conduct of clinical research: the challenge of getting enough subjects for large prevention trials of neurodegenerative diseases, and the time and costs associated with doing so. With the Registry, we expect to create a large pool of potential participants in Prevention Trials. At the outset, our geographic focus will be the San Francisco Bay Area. Principal Investigators for these treatment trials can apply to the Brain Health Registry for the purposes of identifying potential participants in clinical trials. Any initial contact for these purposes will come from the Brain Health Registry – as a means to assure participants that names and contact information will not be shared without the participant’s explicit permission.
When the Investigator Portal is functional, it will host the application for those scientists who wish to engage with the Brain Health Registry staff and database. Those who qualify will be given password-protected access to the de-identified data.
Until the Investigator Portal is functional, scientists with queries may contact firstname.lastname@example.org.