The aim of the study was to determine the incidence of Parkinson’s disease and other degenerative / vascular parkinsonian disorders in a defined geographical area in the North-East of Scotland and to describe the long-term prognosis of patients and carers in an incident cohort compared to age-sex matched community controls.


  • Referrals from GPs
  • Referrals from hospital consultants
  • Hand-searching referral letters (neurology & DOME)
  • Electronic searching (GP, hospital discharge data)
  • Screening over 65 and over 75’s

Annual follow-up plus linked to death register.

Last update – 08/03/2017

The NIMROD (Neuroimaging of Inflammation in Memory and Other Disorders) study aims to understand the role of inflammation in several forms of dementia, memory loss and depression (Alzheimer’s disease (AD), dementia with Lewy bodies (DLB), Parkinson’s disease dementia (PDD), progressive supranuclear palsy (PSP), frontotemporal dementia (FTD), late life depression (LLD), mild cognitive impairment (MCI)). It also aims to understand the changes in the immune system, from immune cells and other components in the blood and cerebrospinal fluid.

To achieve this, NIMROD looks at brain changes in dementia, depression and related disorders in several different ways, detecting differences in brain structure and function, measuring inflammation and annual psychology and memory assessments. A further aim is to investigate if neuroinflammation can predict subsequent clinical course, including cognitive and functional decline.

Last update – 01/02/2017

GENFI is a five year longitudinal biomarker cohort study of genetic Frontotemporal Dementia and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families). Non-carrier first-degree relatives will serve as a control group.
All GENFI participants will be assessed longitudinally (annually) with a set of clinical, neuropsychiatric, cognitive, imaging and biosample protocols.

Last update – 25/01/2017

ADNI began in October 2004. The overall goal is to validate biomarkers for Alzheimer’s disease clinical trials. One aim is to find, validate and standardize more sensitive and accurate methods to detect Alzheimer’s disease at earlier stages and mark its progress through biomarkers. The study gathered and analyzed thousands of brain scans, genetic profiles, and biomarkers in blood and cerebrospinal fluid that are used to measure the progress of disease or the effects of treatment. More information on All data is publically available at USC/LONI/ADNI.

The three overarching longitudinal ADNI study goals are:

  • Validation of biomarkers, especially for amyloid and tau, for use in AD clinical trials.
  • To detect Alzheimer’s disease (AD) at the earliest stage possible and identify ways to track the disease through biomarkers.
  • To support advances in AD intervention, prevention and treatment through the application of new diagnostic methods to apply at the earliest stages technically possible – when intervention may be most effective.
  • To continually develop ADNI’s now- legendary data access policy and continuously improve and expand the unprecedented data sharing model.

Last update – 07/02/2017

The PREVENT Research Programme has established a cohort of individuals to explore differences in the brain and cognitive function in healthy people in mid-life (aged 40-59). People are grouped into high, mid and low risk based on their family history and APOE status (a well-known risk gene for Alzheimer’s disease).

650 participants are assessed on biological indicators including markers in blood, saliva, urine and spinal fluid as well as direct imaging of the brain’s structure and function. Changes in all of these markers will be monitored at 2 years to work out if risks that predict these changes. One of the main aims of the study is to identify the earliest signs of changes in the brain whilst people are still in good health.

Last update – 13/12/2017

The PICNICS study is an observational study tracking the progression of patients with incident Parkinson’s disease over several years to better understand how the disease behaves over time, and establish the pattern of evolution of subtypes of Parkinson’s disease. Understanding differences between subtypes and what drives them will inform development of stratified therapies. The study recruited patients with Parkinson’s disease between 2008 and 2013, and is following them up every 18 months with clinical assessments, cognitive assessments and biological sampling.

Last update – 16/01/2017

BePaiD (Behaviour and Pain in Dementia) is a longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD and pain at admission and every 4 (+1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality.

The aim of the study is to define the prevalence of behavioural and psychological symptoms of dementia (BPSD) and explore their clinical associations, particularly with pain, BPSD encompasses a range of symptoms including agitation, aggression, delusions, hallucinations, depression and apathy.

Last update: 16/01/2017

The OPDC Discovery cohort is a prospective, longitudinal study that has recruited patients with early idiopathic Parkinson Disease, healthy controls and participants at risk of PD. The study also includes participants with REM Sleep Behaviour Disorder. Over 1500 subjects have been recruited to the cohort, including 1087 people with Parkinson’s, 300 healthy controls, 111 First degree PD relatives and 151 PSG-diagnosed REM sleep behaviour disorder, thought to be ‘at-risk’ of developing future Parkinson’s. All patients have a clinical assessment repeated every eighteen months so we can better understand the progression of Parkinson’s over time. Over 500 patients have been seen for a second visit which has allowed us to identify some important differences in the way Parkinson’s progresses in different people.

Last update: 29/12/2016

The ICICLE-PD study aims to accurately characterise two independent cohorts of incident parkinsonism in Newcastle-Gateshead and Cambridgeshire. A key objective is to identify patients who develop Parkinson’s disease dementia (PDD) and the factors that predict its evolution. From this information, a simplified panel of tests that can be used to predict PDD will be established. ICICLE-PD will therefore provide a platform for studies investigating agents designed to help treat this complication of PD. Participants were recruited between June 2009 and March 2012. Longitudinal follow up is on going with assessments in person at 18-month intervals.

Last update: 16/01/2017

The Gipuzkoa Alzheimer Project (PGA) is a longitudinal study on pre-clinical Alzheimer’s disease. This study aims to investigate the prevalence, clinical, cognitive and neuroimaging features and potential risk factors related to cardiovascular health and lifestyles for pre-clinical AD in asymptomatic (or very mildly symtopmatic, e.g. SCD) subjects from the community.

Follow-up Scheduled every 3 years for a minimum of 12 years. The first 3-year follow-up was completed in June 2015. The loss of subjects in the follow up was 9 %. 80% of people who donated cerebrospinal fluid at the baseline visit did the same in this follow-up visit. Second follow-up visit (6 yrs) to be started in April 2017.

Last update: 16/01/2017