Brain Health Registry: An Online Registry to Identify and Assess Subjects for Brain Research (BHR)

April 18, 2024 updated by: University of California, San Francisco

Brain Health Registry - Online Registry for Brain Research

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.

Study Overview

Status

Recruiting

Conditions

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

Study Type

Observational

Enrollment (Estimated)

200000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

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 participants age 55 years and older.

Description

Inclusion Criteria:

  • Anyone over the age of 18 is welcome to join the Registry

Exclusion Criteria:

  • N/A

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Prospective

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Alzheimer's Disease
Time Frame: 10 years
The overall goal of The Brain Health Registry is to facilitate and accelerate treatments for diseases which affect the brain.
10 years

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Neurodegenerative Diseases
Time Frame: 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.
10 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of California, San Francisco

Investigators

  • Principal Investigator: Michael Weiner, MD, University of California, San Francisco

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

September 1, 2013

Primary Completion (Estimated)

September 1, 2030

Study Completion (Estimated)

September 1, 2030

Study Registration Dates

First Submitted

August 1, 2013

First Submitted That Met QC Criteria

March 27, 2015

First Posted (Estimated)

March 30, 2015

Study Record Updates

Last Update Posted (Estimated)

April 19, 2024

Last Update Submitted That Met QC Criteria

April 18, 2024

Last Verified

April 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 12-09628

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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