The overall goal of this project is to identify, assess and longitudinally monitor subjects who are interested in participating in brain research. Participants will enroll through the website, BrainHealthRegistry.org, and provide informed consent prior to any study activities. The website will collect a variety of information, including participants' overall health, memory complaints, family history of dementia and Alzheimer's disease (AD), mood status, sleep, diet, and exercise—all through self-reported online questionnaires. Participants will also be ask to take online cognitive tests, and to return to the website at regular intervals, to complete follow-up questionnaires and neuropsychological assessments. Everyone over the age of 18 is welcome to participate. To join the Brain Health Registry, please visit www.BrainHealthRegistry.org.
Through advertisement and community outreach, potential participants will be directed to the website, BrainHealthRegistry.org. The overall goal of this project is to identify, assess and longitudinally monitor subjects who are interested in participating in brain research. Participants will enroll through the website, BrainHealthRegistry.org, and provide informed consent prior to any study activities.
The website will include:
1. Information about the Brain Health Registry (who is eligible to participate, the goals of the project and other relevant information about investigators and sponsors involved in the Initiative)
2. Frequently Asked Questions (FAQs) such as "How will my information be used?", "How will patient information be safeguarded?", "What information will be requested?", "How much time will be required for registration and testing?" will be addressed for participants.
3. General information about Alzheimer's disease and other neurodegenerative diseases discussed in lay terms Links to sites that may be of interest to participants
4. Login to our secure Registry website
The Registry will be a large, online database of volunteers who are interested in participating in neuroscience research. While anyone over the age of 18 is welcome to join the Registry, the intent is to concentrate all efforts on enrolling 50,000 participants age 55 years and older. It will consist of online tools and databases, which are HIPAA-compliant and secure. The Registry will contain the following:
1. A secured login that can be reset at the user's request
2. An online information sheet will outline the purpose of the Registry, benefits of the project, potential risks and all other relevant information that will allow users to make an informed decision whether to participate in the Registry
3. Demographic information (name, address, date of birth, ethnicity, marital status. education, military service and other relevant demographic information)
4. Questionnaires to collect information about cognitive and mood problems, including (i) Family History of Neurodegenerative Disease (ii) The Measurement of Everyday Cognition (ECog)- a self-report questionnaire which will assess participant perception of problems with cognition (iii) Early Developmental History- including information about developmental delays, learning disorders and education history (iv) Geriatric Depression Scale (GDS)- a self-report questionnaire to assess mood, especially symptoms of depressed mood (v) Sleep Questionnaire- a questionnaire to evaluate sleeping habits and sleep disturbance (vi) Exercise- a questionnaire to assess current and past levels of exercise (vii) Alcohol/Drug Use- a questionnaire to evaluate current and past use of drugs and/or alcohol (viii) Medical History- a questionnaire to evaluate current and past medical diagnoses and medication use
5. Cognitive testing tools- The Registry will include online assessment (currently administered by CogState and Lumosity) of cognitive functioning utilizing computerized tests of memory, attention, information processing speed and executive functioning; results from all online cognitive testing will be linked to participant information with a unique subject identification code
- Observation: Cohort
- Perspective: Prospective
- Sampling: Non-Probability Sample
The Registry is a large, online database of volunteers who would like to participate in clinical trials and research. Anyone over the age of 18 is welcome to join the Registry, and the intent is to concentrate all efforts on enrolling 50,000 participants age 55 years and older.
|Type||Measure||Time Frame||Safety Issue|
|Primary||Alzheimer's Disease||10 years||No|
|Secondary||Neurodegenerative Diseases||10 years||No|