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Use Cases

Study

Description

Data Manager / Software Developer

Principal Investigator

National Study of HIV in Pregnancy in Childhood

The NSHPC is based in the Centre for Paediatric Epidemiology and Biostatistics at the Institute of Child Health, London. Since 1989 pregnant women with diagnosed HIV infection have been reported through a quarterly reporting scheme administered under the auspices of the Royal College of Obstetricians and Gynaecologists. Paediatric reporting started in 1986, and is mainly carried out through the British Paediatric Surveillance Unit's monthly 'orange card', which is routinely sent to all consultant paediatricians registered with the Royal College of Paediatrics and Child Health. Some clinicians looking after large numbers of children report directly to the NSHPC. Laboratory sources also contribute data.

Between 1990 and 2009 about 11,500 pregnancies were reported: the annual number has exceeded 1000 every year since 2003, and has remained at around 1400 a year since 2007.Overall about 12,000 children born to infected women have been reported, of whom approximately 10% were born abroad, and 1800 are HIV-infected. Another 400 children who acquired their infection through other routes were reported; over 60% of these were infected during the course of treatment for haemophilia, and the survivors of this group are now adults.

Janet Masters

Dr Pat Tookey

Whitehall II

The 'Whitehall II' study originates from the first Whitehall study of 18,000 men in the Civil Service, set up in 1967. The first Whitehall I study showed that men in the lowest employment grades were much more likely to die prematurely than men in the highest grades. The Whitehall II study was set up to determine what underlies the social gradient in death and disease and to include women.
In 1985, 10,308 non-industrial civil servants aged between 35 and 55 years took part in a medical examination at their workplace, and completed a baseline survey. This cohort has been, and continues to be, followed up over time completing medical examinations and surveys. Most participants are now retired or are approaching retirement, and the study is now looking at explaining inequalities in health in an ageing population.
A person's health is influenced by the conditions in which he or she lives and works. The "Work, Stress and Health"booklet summarises some key findings from the Whitehall II study including:
• The more senior someone is in the employment hierarchy, the longer he or she might be expected to live compared to people in lower employment grades.
• The combination of high demands and low control at work predicts poor health.
• Workers reporting high effort-reward imbalance are at increased risk of coronary hearth disease and poor health.
• A healthy diet, exercise and quitting smoking all reduce the risk of disease and promote well-being.

Aida Sanchez

Professor Sir Michael Marmot

UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS)

The purpose of this study is to determine whether screening will detect ovarian cancer at an early stage when treatment is more effective and therefore reduce the number of deaths due to the disease.The study aim is for 202,000 women to be recruited over 3 years.

  • To establish the impact of ovarian cancer screening on ovarian cancer mortality.
  • Primary Endpoint: Ovarian cancer mortality.
  • To determine the physical morbidity of ovarian cancer screening
  • To determine the resource implications of screening
  • To assess the feasibility of population screening as reflected by uptake of invitations and compliance rates with annual screening
  • To compare the performance of two screening strategies
  • To establish a serum bank for future assessment of novel tumour markers

Andy Ryan / Robert Liston

Professor Usha Menon / Professor Ian Jacobs

Cardiovascular disease research Linking Bespoke studies and Electronic Records (CALIBER)

The CArdiovascular disease research using Linked Bespoke studies and
Electronic Records (CALIBER) programme was established in 2009 and is
funded by both the Wellcome Trust and the National Institute of Health
Research (NIHR). CALIBER is based on linking the national myocardial
infarction register to the rich longitudinal primary care record and to
highly phenotyped cohorts in the UCL genetics consortium. Currently, the
CALIBER dataset is composed by linkage of several datasets:

  • General Practice Research Database (GPRD)
  • Myocardial Ischemia National Audit Project (MINAP)
  • Hospital Episode Statistics (HES)
  • Mortality data from the Office for National Statistics (ONS)

Spiros Denaxas

Professor Harry Hemingway

Optimising Management of Angina (OMA)

Coronary heart disease (CHD), predominantly due to myocardial infarction (MI), is the number one cause of death in the United Kingdom (British Heart Foundation). However, one of its most common initial manifestations, angina pectoris, remains as of yet understudied and its burden may be underappreciated. This is partly due to the fact that diagnosis of stable angina pectoris is based solely on the characterization of the pain as elicited by the doctor. Many patients with typical symptoms of stable angina are not diagnosed as angina (Phillpot et al., 2001) and factors such as sex, ethnicity and age may influence the physician's final recommendations for diagnostic testing such as coronary angiography (Hemingway et al., 2003).
In four interlocking research workstreams we will address the following specific objectives:  

  • To determine the cumulative impact on patient outcome of missed opportunities for improving patient outcome, from the beginning to the end of the patient journey,  across five of the most common symptomatic coronary presentations, assessing inequalities in care and outcome.
  • To determine at the level of the individual hospital the extent to which the organisation and processes of care have an impact on the patient journey. We will assess how variations measured at hospital level are impacted by the quality of primary care.
  • To establish the effectiveness and cost-effectiveness of a multi-faceted intervention targeting initial specialist management at hospital chest pain clinics of patients early in the symptomatic phase of the patient journey.
  • To determine whether novel biomarkers are a cost-effective addition to existing clinical information in predicting the progression of chronic stable angina to acute fatal and non-fatal events.

Spiros Denaxas

Professor Harry Hemingway

UK Collaborative Study of Congenital Heart Defects (UKCSCHD)

Congenital heart defects may also be called congenital heart disease or CHD. The words are used to describe a heart that is shaped differently from a normal heart. There may be holes or connections to blood vessels that are not in the normal place. Sometimes these have no effects on the way the heart works and they may not be noticed for a long time and may not need any treatment at all. But congenital heart defects may also be very serious and the heart may not pump blood and oxygen around the body properly. An operation might be needed early in life. Congenital heart defects may affect your health and what you can do as a child and adult, but they may also have no effects at all.
This is a research study to find out more about life for school-age children who have congenital heart defects. We would like to find out more about the health, social and educational experiences of children who are born with a congenital heart defect. We will also look at how medical treatment or surgery in early life affects health. We are most interested to know how easy it is to do day-to-day activities, like going to school, taking part in sport and playing with friends.
We don't know all the things that might be different for a child who has a congenital heart defect. We want to find out more by asking children and parents what it is like to have a heart problem. We hope that the study will help to explain why some children with heart problems are healthier than others and also to design better care in the future.

Doctors in all paediatric cardiology centres in the UK have been asked to contact the parents of more than 4000 children who were born in the UK, between 1992 and 1996, and have a congenital heart defect that was serious enough to need treatment before they were 1 year old . These children and parents will be asked if they wish to answer a questionnaire about themselves. The questionnaire asks about a child's health, development, social activities, school and exercise. All the answers will be kept confidential and anonymised. We will also be asking the same questions of parents of children who don't have heart problems to find out if they are any different.
This study will tell doctors and parents more about what life is like for a child with a heart problem as they grow up. We hope this information will help us to provide better health services so that every child can be as active, independent and happy as possible.

Rachel Knowles

Rachel Knowles