Title of cohort


PREDICT-PD

Acronym for cohort


Name of Principal Investigator - Title


Dr

Name of Principal Investigator - First name


Alastair

Name of Principal Investigator - Last name


Noyce

Address of institution -Institution


UCL Institute of Neurology

Address of institution - Street address


1 Wakefield Street

Address of institution - City


London

Address of institution - Postcode


WC1N 1PJ

Country


United Kingdom

Website


www.predictpd.com

Contact email


[email protected]

Funding source


Parkinson's UK

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?


2016-2020

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


2

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:


60

Q4a. Study criteria: what is the age range of participants at recruitment? To:


until death

Q4b. Study criteria: what are the inclusion criteria?


UK residents

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)?


1,000-5,000 participants

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)?


Yes

If yes please specify


Incident PD

Q7. What is the study design (select all that apply)?


Prospective cohort|Longitudinal|Cross sectional survey

Q8. Are your cases matched by


Other health assessment

Q9a. Does your study include a specialised subset of control participants?


No

Q9b. If your study includes a specialised subset of control participants please describe


Q10a. i) Please enter the data collection start date


11/04/2011

Q10a. ii) Please enter the data collection end date


11/05/2021

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

Q11. Is data collected


Only through the study

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

% available


Q13a. Please give information on the format and availability of data stored in a database (2)


Database is web-based

% available


Q13a. Please give information on the format and availability of data stored in a database (3)


Database on spreadsheet (e.g. excel)

% available


Q13a. Please give information on the format and availability of data stored in a database (4)


Database on paper

% available


Other (please specify)


% available


Q13b. Please give information on the format and availability of data held as individual records (1)


% available


Q13b. Please give information on the format and availability of data held as individual records (2)


% available


Q13b. Please give information on the format and availability of data held as individual records (3)


% available


Q13b. Please give information on the format and availability of data held as individual records (4)


Data held on cards

% available


20

Please specify language used


English

Q14a. Is data available to other groups?


Yes

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?


No policy exists

Q16a. Are tissues/samples/DNA available to other groups?


Yes

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)?


Yes

Q17. Is information on biological characteristics available to other groups?


If available for a subset please specify number of patients and % of total cohort

Number of Patients


800

% of total cohort


65

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