Title of cohort


Northern Ireland Cohort for Longitudanal Study of Ageing

Acronym for cohort


NICOLA

Name of Principal Investigator - Title


Prof

Name of Principal Investigator - First name


Frank

Name of Principal Investigator - Last name


Kee

Address of institution -Institution


Queen's University of Belfast

Address of institution - Street address


QUB Centre for Public Health, Institute of Pathology, Royal Hospital Site, Grosvenor Road

Address of institution - City


Belfast

Address of institution - Postcode


BT12 6BA

Country


United Kingdom

Website


https://www.qub.ac.uk/sites/NICOLA/

Contact email


[email protected]

Funding source


ESRC (wave 1) , Atlantic Philanthropies (wave 2)

Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?


Neurodegenerative disease in general

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?


The study will look at health, lifestyles and financial situations of 8,500 people as they grow older monitoring how their circumstances change over a 10 year period.

Q2b. What distinguishes this cohort from other population cohorts?


Focused on ageing and camparable with other aging studies in UK and Ireland

Q3a. i) Number of publications that involve use of your cohort to date


0

Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, 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 population


Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:


50

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


Until death

Q4b. Study criteria: what are the inclusion criteria?


Age 50 and over

Q4c. Study criteria: what are the exclusion criteria?


N/A

Q5. What is the size of the cohort (i.e. how many participants have enrolled)?


5,001-10,000 participants

Q6a. Please describe what measures are used to characterise participants


Anthropometric and physical: Weight Height Waist & Hip circumference (used to calculate BMI and WHR) Blood pressure (clinic measured) Heart rate Spirometry Step test Timed up and go Visual Acuity & Contrast sensitivity (Matrix Perimetry) Lens Photography (Pentacam HR) Multi-modal retinal imaging (Optical Coherence tomography (OCT),Colour, multi-spectral, infra-red, fundus auto fluorescence (FAF))Ultra wide field retinal imaging (Colour and auto fluorescence Intra-ocular pressure Auto-refraction Grip strength (dynamometry)

Q6b. Are there additional measures for participants with a clinical disorder?


No

Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?


No

If yes please specify


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


Longitudinal

Q8. Are your cases matched by


Age

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


01/10/2013

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

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)


No

% available


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


TBC

% available


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


TBC

% available


Other (please specify)


% available


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


TBC

% available


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


TBC

% available


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


TBC

% available


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


TBC

% available


Please specify language used


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

Q15. What data sharing policy is specified as a condition of use?


Data made publicly available after a specified time point

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


Yes

Q16b i) If yes, please describe below:


Living donors: blood| Living donors: DNA

Q16b. ii) In what form are tissues/samples/DNA supplied?


Secondary samples: DNA

Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?


No

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


No

Number of Patients


TBC

% of total cohort

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