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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 ADNI-info.org. 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 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 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 Norfolk component of the European Prospective Investigation of Cancer (EPIC) recruited over 30,000 people from 1993 to 2000. EPIC-Norfolk participants are men and women who were aged between 40 and 79 when they joined the study and who lived in Norwich and the surrounding towns and rural areas. They have been contributing information about their diet, lifestyle and health through questionnaires and health checks over two decades.

Following baseline data collection the cohort has been followed up at 18 months by questionnaire, 3 years (1997-2000) – second health check and questionnaire, 10 years – health questionnaire , 13 years (2006-2011) – third Health examination and questionnaire.

The primary aim of the ten country half a million international EPIC collaboration is to examine the relationships between diet and incident cancers; that is, cancers which have developed after they joined the study. This broadened to include lifestyle and genetic factors and other diseases

A secondary aim is to study the relationship between dietary intake and other diseases and disease risk factors. In EPIC-Norfolk, these include heart attacks and strokes, rheumatoid arthritis, diabetes, thyroid disease, osteoporosis, dementia, eye diseases and many others. We are also studying the link between disease and other factors, such as psychosocial health.

EPIC Norfolk is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research.

Last update: 07/12/2017