Healthy, Neurodegenerative Disease
Conditions
Keywords
Brain Health, Brain Research, Alzheimer's Disease, Neurodegenerative Disease, Parkinson's Disease, Dementia, Stroke, PTSD, Multiple Sclerosis
Brief summary
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.
Detailed description
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 participants age 55 years and older. It will consist of online tools and databases, which are HIPAA-compliant and secure. 1. Participants will access the Registry by going to the BHR website, BrainHealthRegistry.org 2. Participants will provide their email address and create an account and user name with the Registry 3. The Registry will send an automatic email to the participant to verify their email address 4. Participants will read the online Information Sheet and will be asked to provide their consent by clicking either I consent or I decline. Participants who decline to participate in the Registry will be automatically directed out of the Registry website 5. Participants who give their consent will be permitted to continue through the registration process, which includes completing a battery of questionnaires designed to obtain a general understanding of participants health, medical history wellbeing 6. In addition to questionnaires, participants will be able to complete online cognitive assessments. 7. Participants will given the option to elect a Caregiver and/or Study Partner (CASP) to enrich their study profile. 8. Participants may be referred to other research studies and/or clinical trials
Interventions
None listed
Sponsors
University of California, San Francisco
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Anyone over the age of 18 is welcome to join the Registry
Exclusion criteria
* N/A
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Alzheimer's Disease | 10 years | The overall goal of The Brain Health Registry is to facilitate and accelerate treatments for diseases which affect the brain. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Neurodegenerative Diseases | 10 years | The main goal of this project is to promote healthy brain aging through the prevention of Alzheimer's disease and other neurodegenerative diseases such as Parkinson's disease, depression, stroke and other conditions that affect brain function in older adults. Our broader goal is to develop an innovative model for subject recruitment and clinical trials of treatments for brain disorders across the age spectrum. |
Countries
United States
Outcome results
None listed