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RecruitingNCT04472130NDD RegistryUpdated Sep 18, 2026

Neurodegenerative Diseases Registry

An observational study in Neurodegenerative Diseases, Parkinson Disease and Multiple System Atrophy, sponsored by Vincent Mok. Recruiting at 1 site in Hong Kong. Open to participants aged 18 Years to 80 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-09-18.

Sponsored by Vincent Mok · Observational

From the registry’s dates

  • Started Oct 2019; still recruiting 7 years 1 month later.
Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
1,400
Ages
18 Years to 80 Years
Sex
All
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Study summary

With the increase in life expectancy of our population due to advancement of medical diagnosis and treatments, the incidence of age dependent neurodegenerative diseases increased, including Alzheimer's disease (AD), parkinsonian syndromes (PS), small vessel disease (SVD) and motor neuron disease (MND). In spite of the progress of knowing the pathogenesis of various neurodegenerative diseases at molecular and genetic level, they are still very incompletely understood and often cause diagnostic and therapeutic challenges to physicians. Due to the overlapping presentation and similar brain pathology, especially in the early stage of the diseases, it is difficult to differentiate idiopathic Parkinson's disease (iPD) from atypical parkinsonian syndromes, such as multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). Similarly, distinguishing AD from other dementia syndromes including frontotemporal dementia (FTD), dementia with Lewy Bodies (DLB), corticobasal degeneration (CBD) and vascular dementia can be difficult. It is necessary to develop accurate and comprehensive diagnostic tests to properly prognosticate the diseases, start treatments in early stage of the diseases and maximize the accuracy of drug trials for more effective preventive and therapeutic measures for these neurodegenerative diseases.

Therefore, the registry aims to generate a large database of cognitive, behavioral, lifestyle and psychological information of the subjects who suffered from neurodegenerative diseases, as well as to examine the genetic basis of neurodegenerative diseases to help decode the pathogenic mechanisms of the diseases. The registry may provide important information to understand symptom development of the neurodegenerative diseases, in which may help physicians to diagnose the diseases more accurately and provide better treatment plans.

Read the detailed description

This is a cohort study. It involves baseline, 1st follow up visit and 2nd follow up visit. At baseline visit, all participants will go through a list of assessments and questionnaires and blood taking. Follow-up visit(s) will be scheduled every one to two years, in which the same set of assessments and questionnaires will be administered.

  1. Clinical assessments and questionnaires

    Different clinical assessments would be administered depending on the group that the participant belongs to:

    • Hoehn and Yahr Stage and the Unified Parkinson's Disease Rating Scale (UPDRS) for iPD, PSP and SVD patients with parkinsonism features
    • Unified MSA Rating Scale (UMSARS) for MSA
    • Levodopa Equivalent Dosage for medication burden for parkinsonian syndromes patients
    • Amyotrophic lateral sclerosis functional rating scale revised (ALSFRS-R), body weight and forced vital capacity (FVC) for MND group
    • Montreal Cognitive Assessment Hong Kong version (HK-MoCA), Olfactory Identification Test (OIT) and Farnsworth-Munsell 100 Hue test for all groups

    Video taking would be administered to record participants' eye movement if necessary. For example, video of eye movement is useful to rate MSA patients' ocular motor dysfunction, such as gaze-evoke nystagmus.

    Patients with parkinsonian syndromes will fill in a set of questionnaires, including demographic information, medical history, history and current medications, wearing-off questionnaire, impulsiveness questionnaire, Buss-Perry Aggression Questionnaire (BPAQ), rapid eye movement sleep behavior disorder questionnaire (RBDQ), Epworth Sleepiness Scale (ESS), Morningness-Eveningness Questionnaire (MEQ), Insomnia Severity Index (ISI), Beck's Scale for Suicide Ideation (BSSI), Scales for Outcomes in Parkinson's Disease-Autonomic questionnaire (SCOPA-AUT), Hospital Anxiety and Depression Scale (HADS), Patient Health Questionnaire (PHQ9), lifestyle and life history, and occupation history.

  2. Blood sampling Blood taking would be carried out at Prince of Wales Hospital and will be processed and transported to the laboratory according to standard procedure.

    Venous blood samples are collected into 6 EDTA tubes and 1 Heparin tube. The volume of total blood samples will not exceed 23ml. Serum is obtained within 1 hour by centrifugation at 3,000 rpm for 10 min and stored at -70°C until laboratory evaluation for proteomics, SERS and other biochemical and genetics studies.

  3. Sub-studies Selected participants in the cohort groups, especially those with early disease onset and/or familial cases, would proceed to sub-studies which include brain MRI, brain PET, lumbar puncture and/or skin biopsy. Subjects are voluntary to join one or more sub-studies.
02

Conditions studied

  • Neurodegenerative Diseases
  • Parkinson Disease
  • Multiple System Atrophy
  • Progressive Supranuclear Palsy

Keywords

  • Neurodegenerative Diseases
  • Parkinson Disease
03

In context

Neurodegenerative Diseases

436 studies on the registry are indexed under Neurodegenerative Diseases; 143 are open to participants now.

This study's planned enrollment of 1,400 is above the median of 186 across 156 observational studies indexed under Neurodegenerative Diseases.

Browse Neurodegenerative Diseases studies →

Lead sponsor

This is the only study on the registry with Vincent Mok as lead sponsor.

Counted across the registry records on this site, refreshed daily.

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Who can participate

Ages eligible
18 Years to 80 Years
Sexes eligible
All
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

Subjects will be recruited in neurology outpatient clinic in Prince of Wales Hospital, Hong Kong, who meet the inclusion and exclusion criteria listed above.

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Age should be between 18-80 years old.

Exclusion criteria

Exclusion Criteria:

  • Patients with ongoing central nervous system infection and/or acute stroke or active brain tumor.
05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
1,400 participants (estimated)
Target follow-up
4 Years
Patient registry
Yes
Biospecimen retention
Samples with dna

Groups and cohorts

  • Early idiopathic Parkinson's Disease

    200 patients with iPD based on Movement Disorder Society clinical diagnostic criteria for Parkinson's disease with disease onset less than 5 years

  • Non-early idiopathic Parkinson's Disease

    200 patients with iPD based on Movement Disorder Society clinical diagnostic criteria for Parkinson's disease with disease onset more than 5 years

  • Multiple System Atrophy

    100 patients with Multiple System Atrophy based on Second consensus statement on the diagnosis of MSA

  • Progressive Supranuclear Palsy

    100 patients with Progressive Supranuclear Palsy based on Clinical research criteria for diagnosis of PSP

  • Alzheimer's Disease

    100 patients with Alzheimer's Disease by Diagnostic and Statistical Manual of Mental disorder, Fifth edition (DSM-5) criteria

  • Motor Neuron Disease

    200 patients with Motor Neuron Diseases by revised El Escorial criteria or Awaji ALS criteria

  • Small Vessel Disease

    200 patients with cerebral Small Vessel Diseases

  • Frontotemporal Dementia

    100 patients with Frontotemporal Dementia by International consensus criteria for behavioral variant FTD (FTDC) or Primary Progressive Aphasia by Gorno-Tempini

  • Healthy Control

    200 age and sex matched healthy controls

06

What researchers measure

Primary outcomes

  1. the score change in Unified Parkinson's Disease Rating Scale (UPDRS)

    The Unified Parkinson's Disease Rating Scale (UPDRS) would be administered to assess disease severity for iPD, PSP and SVD patients with parkinsonism features

    Time frame: baseline visit, 2 years after baseline visit, 4 years after baseline visit

  2. the score change in Unified MSA Rating Scale (UMSARS)

    The Unified MSA Rating Scale (UMSARS) would be administered to assess disease severity for patients with MSA

    Time frame: baseline visit, 2 years after baseline visit, 4 years after baseline visit

  3. the score change in Montreal Cognitive Assessment Hong Kong version (HK-MoCA)

    Montreal Cognitive Assessment Hong Kong version (HK-MoCA) is used to assess participants' cognitive functions for all groups

    Time frame: baseline visit, 2 years after baseline visit, 4 years after baseline visit

07

Study locations

1 of 1 sites recruiting
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Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Sep 18, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT04472130
Lead sponsor
Vincent Mok
Responsible party
Vincent Mok (Professor, Chinese University of Hong Kong) — Sponsor-investigator
First posted
Jul 15, 2020
Start date
Oct 9, 2019
Primary completion
Aug 1, 2031 (estimated)
Completion
Aug 1, 2031 (estimated)
Last update
Sep 18, 2026

Study contacts

Elyia Han, Bachelor
Contact
elyiahan@cuhk.edu.hk
+852 2697 5027
Pauline Kwan, Master
Contact
paulinekwan@cuhk.edu.hk
+852 2635 2160
Vincent Mok, PhD
principal investigator · Chinese University of Hong Kong

Oversight

FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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