Neurodegenerative Diseases Registry

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Brief Title

Neurodegenerative Diseases Registry

Official Title

Biomarkers in Neurodegenerative Diseases

Brief 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.

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

             -  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

        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.

Study Type

Observational [Patient Registry]

Primary Outcome

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


Neurodegenerative Diseases

Study Arms / Comparison Groups

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


* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information

Estimated Enrollment


Start Date

October 9, 2019

Completion Date

August 2024

Primary Completion Date

August 2024

Eligibility Criteria

        Inclusion Criteria:

          -  Age should be between 18-80 years old.

        Exclusion Criteria:

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




18 Years - 80 Years

Accepts Healthy Volunteers

Accepts Healthy Volunteers


Vincent Mok, PhD, +852 2697 5027, [email protected]

Location Countries

Hong Kong

Location Countries

Hong Kong

Administrative Informations



Organization ID


Responsible Party


Study Sponsor

Vincent Mok

Study Sponsor

Vincent Mok, PhD, Principal Investigator, Chinese University of Hong Kong

Verification Date

July 2021