Clinical Trial Details
— Status: Enrolling by invitation
Administrative data
| NCT number |
NCT02402426 |
| Other study ID # |
12-09628 |
| Secondary ID |
|
| Status |
Enrolling by invitation |
| Phase |
|
| First received |
|
| Last updated |
|
| Start date |
September 2013 |
| Est. completion date |
September 2030 |
Study information
| Verified date |
May 2024 |
| Source |
University of California, San Francisco |
| Contact |
n/a |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Observational [Patient Registry]
|
Clinical Trial 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.
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
