CUHK Brain Health Longitudinal Study
BHS
1 other identifier
observational
5,000
1 country
2
Brief Summary
The goal of this study is to develop a large longitudinal cohort of individuals diagnosed with or at high risk for brain diseases (both neurological and psychiatric in nature), in order to identify risk factors that contribute to neurological and psychiatric diseases over time. The investigators seek to capture relevant information from medical records, electronically administered questionnaires and follow up phone-based interviews. The investigators expect to eventually have sufficient power from our dataset to examine risk factors for a variety of brain disorders, both individually and in aggregate. Our ultimate goal is to offer scientifically validated ways to preserve and promote brain health by working with our patients' needs and tracking their progress over time.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jul 2019
Longer than P75 for all trials
2 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
June 13, 2018
CompletedFirst Posted
Study publicly available on registry
July 19, 2018
CompletedStudy Start
First participant enrolled
July 1, 2019
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2038
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 31, 2048
February 24, 2026
February 1, 2026
19.5 years
June 13, 2018
February 21, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Risk factors contributing to neurological and psychiatric diseases
The participants' electronic medical records and questionnaires done (either symptomatic or asymptomatic) would be compared with their follow-up electronic medical records/phone follow-up interview and questionnaires done over time.
December, 2038
Study Arms (3)
Red group
Those participants who had established diagnosis of one or more neurological and/or psychiatric conditions Baseline: The participants' medical history, signs, symptoms and diagnoses of neurological and/or psychiatric disorders would be recorded. Neuro-QoL questionnaire plus an additional subset of questions based on their clinical diagnosis should be done.
Yellow group
Those participants who are high-risk to develop one or more neurological and/or psychiatric conditions, for example: 1. family history (first degree relative) one or more neurological and/or psychiatric conditions; 2. examination, imaging or laboratory findings consistent with pre-symptomatic stages of one or more neurological and/or psychiatric disorders. Baseline: The participants' medical history, signs, symptoms and diagnoses of neurological and/or psychiatric disorders would be recorded. Neuro-QoL questionnaire should be done.
Green group
Those participants who are not meeting criteria for Red or Yellow groups, but interested in longitudinal research on maintenance and/or improvement of their brain health. Baseline: The participants' medical history would be recorded and Neuro-QoL questionnaire should be done.
Interventions
Follow-up over time will continue (either in-person or over the phone) using the same questionnaires (depending on which group they are belongs to) at approximately 6-month intervals. During each follow-up, participants will be screened for any new signs, symptoms and diagnoses of neurological and/or psychiatric disorders, in order to correlate these outcomes with risk factors captured using the procedures described above.
Eligibility Criteria
1. Chinese ONLY 2. Hong Kong Resident
You may qualify if:
- Adult ≥ 18 years of age
- Fulfilling criteria for membership in one of these three groups:
- Red group: established diagnosis of one or more neurological and/or psychiatric conditions
- Yellow group: high-risk to develop one or more neurological and/or psychiatric conditions
- family history (first degree relative) one or more neurological and/or psychiatric conditions
- examination, imaging or laboratory findings consistent with pre-symptomatic stages of one or more neurological and/or psychiatric disorders
- Green group: not meeting criteria for Red or Yellow groups, but interested in longitudinal research on maintenance and/or improvement of brain health
- Subject provides informed consent by signing and dating the written informed consent form
- Subject is willing to answer health questionnaires and be followed longitudinally
You may not qualify if:
- None
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (2)
Chinese University of Hong Kong
Hong Kong, Hong Kong
The Chinese University of Hong Kong
Hong Kong, Hong Kong
Biospecimen
30ml of EDTA blood will be collected for genome sequencing or PCR gene expression. 5-10ml of stool will be collected for microbiome study.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Thomas Wai Hong LEUNG, FRCP
Division of Neurology, The Chinese University of Hong Kong
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- CASE CONTROL
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Professor
Study Record Dates
First Submitted
June 13, 2018
First Posted
July 19, 2018
Study Start
July 1, 2019
Primary Completion (Estimated)
December 31, 2038
Study Completion (Estimated)
December 31, 2048
Last Updated
February 24, 2026
Record last verified: 2026-02
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL, SAP, ANALYTIC CODE
- Time Frame
- The de-identified health information and data would be stored for more than 10 years, so that we can offer scientifically validated ways to preserve and promote brain health by working with our patients' needs and tracking their progress over time. This is because individuals diagnosed with neurological and psychiatric disorders can experience the very first symptoms up to 10-20 years before diagnosis.
- Access Criteria
- These de-identified data will be stored by collaborating institutions in a manner consistent with data storing secure procedures. Only principle investigator, study coordinator and related staffs can access.
De-identified data and health information may be sent out to our research collaborators at Massachusetts General Hospital and Harvard Medical School, where there is a sister institute for brain health for additional analysis.