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Brain Health Registry (BHR)

This study is currently recruiting participants.
Verified March 2017 by University of California, San Francisco
Sponsor:
ClinicalTrials.gov Identifier:
NCT02402426
First Posted: March 30, 2015
Last Update Posted: March 3, 2017
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
Information provided by (Responsible Party):
University of California, San Francisco
  Purpose
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.

Condition
Healthy Neurodegenerative Disease

Study Type: Observational [Patient Registry]
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Target Follow-Up Duration: 10 Years
Official Title: Brain Health Registry

Resource links provided by NLM:


Further study details as provided by University of California, San Francisco:

Primary Outcome Measures:
  • Alzheimer's Disease [ Time Frame: 10 years ]

Secondary Outcome Measures:
  • Neurodegenerative Diseases [ Time Frame: 10 years ]

Estimated Enrollment: 50000
Study Start Date: September 2013
Estimated Study Completion Date: September 2028
Estimated Primary Completion Date: September 2023 (Final data collection date for primary outcome measure)
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 username 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
  Eligibility

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
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 50,000 participants age 55 years and older.
Criteria

Inclusion Criteria:

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

Exclusion Criteria:

  Contacts and Locations
Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02402426


Contacts
Contact: Shannon Finley, MA info@brainhealthregistry.org

Locations
United States, California
BrainHealthRegistry.org Recruiting
San Francisco, California, United States, 94143
Contact: Shannon Finley, MA       info@brainhealthregistry.org   
Sponsors and Collaborators
University of California, San Francisco
Investigators
Principal Investigator: Michael Weiner, MD University of California, San Francisco
  More Information

Additional Information:
Responsible Party: University of California, San Francisco
ClinicalTrials.gov Identifier: NCT02402426     History of Changes
Other Study ID Numbers: 12-09628
First Submitted: August 1, 2013
First Posted: March 30, 2015
Last Update Posted: March 3, 2017
Last Verified: March 2017

Keywords provided by University of California, San Francisco:
Brain Health
Brain Research
Alzheimer's Disease
Neurodegenerative Disease
Parkinson's Disease
Dementia
Stroke
PTSD
Multiple Sclerosis

Additional relevant MeSH terms:
Neurodegenerative Diseases
Nervous System Diseases