Brain Health Registry: An Online Registry to Identify and Assess Subjects for Brain Research
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Healthy, Neurodegenerative Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Brain Health Registry - Online Registry for Brain Research
Overview
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
Primary outcome measures
- Alzheimer's Disease [Time frame: 10 years]
Secondary outcome measures (1)
- Neurodegenerative Diseases [Time frame: 10 years]
Eligibility criteria
Inclusion criteria
- Anyone over the age of 18 is welcome to join the Registry
Exclusion criteria
- N/A
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- BrainHealthRegistry.org — San Francisco
Identifiers
NCT: NCT02402426 · 12-09628