Title of study
Incidence of Cognitive Impairments in Cohorts with Longitudinal Evaluation in Parkinsons disease
Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
Address of institution - Street address
Campus for Ageing and Vitality
Address of institution - City
Address of institution - Postcode
Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?
Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)
Q2b. What distinguishes this case-control study from other studies?
To understand the anatomical, biochemical and genotypic mechanisms determining the transition from Parkinsons to Parkinsons dementia, and to determine high risk clinical features and putative biomarkers predictive of dementia.
Q3a. i) Number of publications that involve use of your cohort to date
Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)
Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available
Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the case-control study
Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:
Q4a. Study criteria: what is the age range of participants at recruitment? To:
Q4b. Study criteria: what are the inclusion criteria?
Newly diagnosed idiopathic PD was diagnosed by a movement disorder specialist and fulfilled Queens Square Brain Bank criteria
Q4c. Study criteria: what are the exclusion criteria?
1. People suspected of parkinsonism prior to the onset of the study on the basis that they are prevalent rather than incident.
2. People who do not possess a working knowledge of English (defined as insufficient to perform the neuropsychological assessments and questionnaires in the opinion of the assessor).
3. Patients with significant memory impairment at presentation (defined as MMSE score < 24), or meeting DSM IV criteria for dementia at presentation. By published standards these patients will not, by definition, have idiopathic PD. Patients with significant memory impairment at presentation (defined as MMSE score < 24), or meeting DSM IV criteria for dementia at presentation. By published standards these patients will not, by definition, have idiopathic PD.
4. Patients who do not have the capacity to consent to be involved in the study (as assessed by criteria laid out in the MHA code of practice, section 4-3).
5. The following parkinsonian disorders:
Q5a. What is the size of the cohort (i.e. how many participants have enrolled)?
Q5b. What is the expected number of control participants?
Q6a. Please describe what measures are used to characterise participants
Queen's Square Brain Bank Criteria, medical history, social history, Movement Disorders Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) Part II and III, Hoehn and Hahr stage.
Q6b. Are there additional measures for participants with the clinical disorder?
Yes, including Non-Motor System Questinniare, Geriatric Depression Scale, Epworth Daytime Sleepiness Scale, Pitsburg Sleep Quality Index, Parkinson's Disease Questionnaire (PDQ-39) and neuropsychological test.
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
Q7. What is the study design?
Q8. Are your cases matched by
Q9a. Does your study includes a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. Is data collection for this study
Data collection ongoing| Data analysis ongoing| Closed to new patients
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Q11. Are data collected
Only through study| Through links to medical records
Q12. Is there a system in place to enable re-contact with patients for future studies?
Q13a. Please give information on data stored in a database (1)
Data summarised in database
Q13a. Please give information on data stored in a database (2)
Q13a. Please give information on data stored in a database (3)
Database on spreadsheet (e.g. excel)
Q13a. Please give information on data stored in a database (4)
Q13a. Please give information on data stored in a database (5)
Please specify language used
Q13b. Please give information on how data is held as individual records
Q14a. Are data available to other groups?
Q14b. If data is available to other groups what is the access policy/mechanisms for access?
Apply to PI or co-ordinator at resource| Access independent of PI| National access| International access| Access for pilot studies permitted
Q15. What data sharing policy is specified as a condition of use?
Q16a. Are tissues/samples/DNA available to other groups?
Q16b i) If yes, please describe below
Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Living donors: cerebro-spinal fluid
Q16b. ii) In what form are tissues/samples/DNA supplied?
Primary Samples: Stabilised samples (frozen or fixed)| Secondary samples: plasma| Secondary samples: DNA| Secondary samples: RNA
Q16b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?
Q17. Is information on biological characteristics available to other groups?
Types: Case Control Studies
Member States: United Kingdom
Diseases: Parkinson's disease & PD-related disorders
Database Categories: N/A
Database Tags: N/A
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