Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
UCL Institute of Neurology
Address of institution - Street address
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?
Parkinson's disease and PD-related disorders
Q1b. When are studies on the above condition(s) expected to become possible?
Q2a. In a single sentence what is the stated aim of the cohort?
Identify subjects at increased risk of PD
Q2b. What distinguishes this cohort from other population cohorts?
Web-based assessment of multiple risk and early disease markers
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 (Principal Investigator, Institution, Title of Study)
Alastair Noyce, UCL, Follow up of intermediate markers and incident cases|Alastair Noyce, UCL, subtle parkinsonian signs in high and low risk|Alastair Noyce, UCL, DaTSCAN and TCS in PREDICT-PD
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
Noyce et al JNNP 2013;85:31-37, Noyce et al Movement Disord 2015;30:1002-1003
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 population
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?
Q4c. Study criteria: what are the exclusion criteria?
PD or neurodegenerative disease, drugs associated with parkinsonism
Q5. What is the size of the cohort (i.e. how many participants have enrolled)?
Q6a. Please describe what measures are used to characterise participants
age, gender, BMI, lifestyle factors, constipation, sleep, smell, finger tapping, ED, genotype, cardiovascular risk
Q6b. Are there additional measures for participants with a clinical disorder?
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
Q7. What is the study design (select all that apply)?
Prospective cohort|Longitudinal|Cross sectional survey
Q8. Are your cases matched by
Q9a. Does your study include a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. i) Please enter the data collection start date
Q10a. ii) Please enter the data collection end date
Q10a. iii) Is data collection for this study
Data collection ongoing|Data analysis ongoing
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Yes - funding applied for/funding awarded
Other please specify here
Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?
Yes (participants given permission to be re-contacted via PIs)
Q13a. Please give information on the format and availability of data stored in a database (1)
Data summarised in database
Q13a. Please give information on the format and availability of data stored in a database (2)
Q13a. Please give information on the format and availability of data stored in a database (3)
Database on spreadsheet (e.g. excel)
Q13a. Please give information on the format and availability of data stored in a database (4)
Q13b. Please give information on the format and availability of data held as individual records (1)
Q13b. Please give information on the format and availability of data held as individual records (2)
Q13b. Please give information on the format and availability of data held as individual records (3)
Q13b. Please give information on the format and availability of data held as individual records (4)
Please specify language used
Q14a. Is 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 committee mechanism
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: peripheral nerve biopsy
Q16b. ii) In what form are tissues/samples/DNA supplied?
Secondary samples: plasma|Secondary samples: DNA
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?
If available for a subset please specify number of patients and % of total cohort
Types: Population Cohorts
Member States: United Kingdom
Diseases: Parkinson's disease & PD-related disorders
Database Categories: N/A
Database Tags: N/A
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