Research projects using your official records

Children of the 90s research uses your official records to help with our research. There is general information about how we do this in 'How we use your official records' above. Over the past few years we have written to all of you to ask if you are happy for us to use your records in this way. We fully accept your right to decide that you don’t want us to access your records, and if you feel this way it is important that you tell us.

Many of you have sent back a decision form letting us know how you want your records used. We will always respect the decision you tell us.

In some circumstances, where research is in the public interest, researchers may be allowed to extract information from your records and use them in research without your consent. This includes information from your health and education records and any criminal convictions or cautions you may have. This only happens when we have asked for your consent and you haven’t responded. It does not let us access the records of people who have told us they don’t want this to happen. For this reason it is important that you return your consent form, particularly if you don’t want us to link to your records.

The research projects listed on this page all need information from official records. Please let us know if you have any questions or if you object to your records being used:

Email: alspac-linkage@bristol.ac.uk
Phone: 0117 33 10010
By post: Data Linkage Team, Children of the 90s, Oakfield House, Oakfield Grove, Bristol BS8 2BN

If you let us know before the project starts then we can exclude your records from the research. Once the research has started it will not be possible to exclude your records.

How we are using your records

Upcoming Projects

Understanding the causes and consequences of having an intellectual disability

People with intellectual disability (also called learning disabilities) have difficulties in understanding new or complex information, in learning new skills and a reduced ability to cope independently, which started before adulthood. People with intellectual disability often have poor long-term outcomes and inequalities compared to the general population. This includes reduced access to and effectiveness of health care, difficulties in education and employment, and higher chances of early death.

Many causes of intellectual disability are genetic in nature. Others are influenced by the environment before (pregnancy) or around the time of their birth (the perinatal period), and in childhood. The Children of the 90s study provides the opportunity to explore how our genes and early life environment can influence the risk of developing an intellectual disability. This project will use information you have given to Children of the 90s in questionnaires and at focus clinics as well as data from GP records and hospital visits to investigate the causes and consequences of having an intellectual disability.

Our first project will look at whether there is a link between mother’s substance use (such as alcohol and tobacco) in pregnancy and the child’s risk of intellectual disability. These substances are known to influence the development of the fetus in the womb, but whether they cause problems like intellectual disability is not known. Understanding such a link is important, as it may help guide policy and help pregnant women make informed choices about the risks of substance use in pregnancy. In the future, we will be interested in understanding the role of other factors in the development of intellectual disability, and also aim to understand the longer term outcomes of having intellectual disability.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used?
  1. Department for Education and local authority records on children who had a statement of special educational needs
  2. Health records (from your GP, hospital visits and community care) about diagnoses of intellectual disability
The project start date: 27th May 2019

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Using linked electronic health data to improve eczema diagnosis and outcomes

Eczema (also known as atopic dermatitis) affects 20% of children and up to 10% of adults, and is becoming more common globally. Eczema is a challenging disease characterised by itch, sleeplessness, discomfort, stress and stigma for sufferers, but it looks very different and the disease takes different courses in different people, and no single treatment for it works for everyone. This suggests that there may be different diseases, all of which get called eczema, but which may in fact be clinically distinguishable subtypes with different prognoses and treatment needs.

We want to find out whether this is true, and to do this we will look for groups of children where the course of disease and other clinical characteristics such as immunological profile, demographics and other comorbid diseases are very similar within group, but different across groups. This will help us characterise these subtypes and in future lead to better estimates of whether the disease will resolve on its own or require medical intervention, and eventually better and more personalised treatment recommendations.  

This study is currently investigating eczema subtypes with an approach called latent class analysis using data from children in the original ALSPAC cohort. We would like to expand on this by looking at linked primary care electronic health records, in order to 1) see if we can replicate our findings using data collected in real-world settings, 2) add to the characterisation of subtypes with additional information not contained in the cohort collections, and 3) do an exploratory analysis to see if phenotypes can be derived based solely on data from electronic health records.

Who will carry out the research? Researchers at the London School of Hygiene and Tropical Medicine
Whose records are being used? The Children of the 90s young adults
Which records are being used?

1. Data from mother and child questionnaires (all years) with information about eczema
2. Linked primary care records relating to eczema

The project start date: 15th April 2019

Remember: you need to let us know by the date given above if you do not want your records used in this way.

 

Ongoing Projects

Derivation of a clinical prediction rule for the diagnosis of asthma

Asthma is common in the UK, causing considerable illness, healthcare usage, and public expense. Accurate diagnosis is essential for good asthma management. Yet, doubt about the best way to diagnose asthma can lead to missed diagnoses and under-treatment, or over-diagnosis leading to unnecessary treatment and healthcare costs.

We want to make it easier to identify and interpret the important information gathered from a patient suspected of having asthma.

Using an existing database, we will look for features that predict who has asthma and use this information to develop an asthma prediction ‘rule’. The ‘rule’ will be tested using general practice data from the UK and the Netherlands.

The prediction ‘rule’ will help doctors and nurses make sense of information in a standardised way, improving the accuracy of asthma diagnosis. Patients will benefit from being diagnosed accurately and receiving the right treatment.

Who will carry out the research? Researchers at the University of Edinburgh
Whose records are being used? The Children of the 90s young adults
Which records are being used?

GP records relating to asthma

The project start date: 8th April 2019

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Investigating the incidence and aetiology of psychosis

Psychotic experiences are reported by around 5-10% of the general population. Although usually transient, they are associated with increased risk of schizophrenia over time, but the natural progression of psychotic experiences and transition to schizophrenia in adulthood has not been examined in detail previously. The purposes of this study are:

i) To examine the proportion of children and adolescents with psychotic experiences who transition to clinical disorder in adulthood, and estimate the extent to which these individuals are identified by primary/secondary care services (i.e. highlighting potential unmet needs)

ii) To use the detailed data in ALSPAC to identify those at highest risk of transition to psychotic disorder and inform tools for prediction

iii) To examine the extent to which associations observed between risk factors (eg cannabis) and psychosis outcomes in ALSPAC and other cohort studies are likely to be over- or under-estimated due to selective loss to follow-up

Linkage to primary and secondary care records is necessary to accurately identify individuals who have sought help for psychotic psychopathology, estimate the unmet public health needs of non help-seeking individuals with psychotic experiences, and examine the extent of potential biases in identifying risk factors. Access to full mental health data within primary care records will also enable us to identify early (prodromal) symptoms in individuals who have not yet transitioned into a full-blown illness, to inform identification of those at highest risk of developing psychosis, and where closer medical supervision might therefore be appropriate.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The original ALSPAC cohort members
Which records are being used?

1. Data from the psychotic experiences clinic interviews at 12, 18 and 24 years
2. Linked primary care records for ALSPAC cohort members

The project start date: 7th December 2018

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Investigating causes of congenital heart disease

Congenital heart disease is a group of problems with a baby’s heart that occur because the heart does not develop properly while they are in their mother’s uterus. Some are very mild and cause no problems where as others require the child to have surgery as a baby and often repeatedly across childhood and adolescence. Worldwide, congenital heart disease was responsible for in excess of 300,000 deaths in 2015. People living with congenital heart disease have been shown to have lifelong issues including increased chances of suffering with mental health problems.

The cause of most types of congenital heart disease is not known. We know that some cases are caused by faulty genes, however, these account for less than 20% of the total. It has been shown that congenital heart disease is more likely to occur in children whose mother smoked during pregnancy, weighed more, had high blood pressure or had high levels of sugar in their blood. We still do not know whether these factors truly cause CHD. Preventive interventions can help decrease the amount of baby’s being born with congenital heart disease, but we need to base them on scientific research that has the best chance of determining causes of the disease to improve the chances of success.

This research will use valuable Children of the 90s information on mothers and fathers during pregnancy to determine risk factors which may cause congenital heart disease in the children. It is believed that these risk factors can influence biological pathways which may harm the development of the baby’s heart. The data we intend on using will be in the form of parental questionnaires from focus clinics, child hospital records and data from GP records. Our work has the scope to improve our understanding of the disease which will allow for new interventions in the future.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s mothers, fathers, children
Which records are being used?

Health records from your GP and hospital visits

The project start date: 12th November 2018

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Later-life health consequences in women with hypertensive disorders of pregnancy

Pregnancy has been called a “stress test” to women’s cardiometabolic system and generally, women experience changes in blood pressure during their pregnancies. However, only some women experience clinically significant hypertensive disorders of pregnancies.

Earlier research has shown that hypertensive disorders of pregnancy are linked to a lower risk of breast cancer, but an increased risk of cardiovascular disease in later life. This project will look at the potential protective factors from pregnancy in terms of reducing the later-life risk of breast cancer, which is among the leading causes of mortality in women.

We will examine whether the general blood pressure changes in pregnancy as well as the more serious hypertensive disorders are associated with a lower breast cancer risk in later life. We will also investigate whether the possible association depends on the presence of a specific variant of a growth factor receptor gene, or other pregnancy factors such as the prematurity of the birth, mother’s age at pregnancy, and offspring gender.

For this project, we need to use information on blood pressure changes and hypertensive disorders in pregnancy from the obstetric records of the Children of the 90s pregnancies and link this with information on breast cancer diagnoses from cancer registry records.

This information is contained with questionnaires you have completed. We will use this information, together with data on the presence of a specific growth factor receptor gene variant from possible DNA samples you have consented to. As always, you will never be identifiable to the researchers who use these data.

Findings from this story have the potential to increase the understanding of how breast cancer risk differs in women and could shed light on possible protective factors for breast cancer.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s mothers
Which records are being used?

1. Cancer registry records

2. Obstetric records from the original Children of the 90s birth

The project start date: 1st October 2018

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Investigating school achievements and mental health in individuals who were looked after or in need as children

In the UK, ‘looked after’ children are those in the care of their local authority, for example children living in a foster home. Children who are ‘in need’ have social services involvement in their lives. Children who are looked after or in need tend to do less well at school and have poorer mental health than their peers. The reasons for this are not fully understood.

By investigating the experiences of the Children of the 90s who were in need or looked after in childhood, we will have a better understanding of what things improve or worsen their education and mental health. For example, we will look at whether the type of care (for example, differences between foster home and children’s home) makes a difference.

We will be able to find out which Children of the 90s were looked after or in need by linking to records held by the Department for Education and local authority. These records will give us information on things such as the reason the participant was looked after or in need (e.g. ‘parental illness’, ‘child disability’, or ‘neglect’), how long they were looked after for, and where they lived while being looked after.

We will use your health records to understand more about your mental health, and any diagnoses, treatments and care you have been given. These records will be linked to the information you and your families have given Children of the 90s. As always, you will never be identifiable to the researchers who use these data.

We hope that our research will improve the understanding of what affects the education and mental health of children who experience being looked after or in need. This new information could be used to help inform changes to improve the education and mental health of children who experience these circumstances in the future.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used?

1. Department for Education and local authority records on children who were looked after or in need

2. School exam, personal characteristics and attendance records from the National Pupil Database

3. Health records (from your GP, hospital visits and community care) about mental health conditions, treatments and care.

The project start date: 13th February 2017

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Early life causes of adolescent depression and anxiety

Depression and anxiety have become much more common among teenagers in the past few decades. Recent figures suggest that around 16% of people aged 16-24 years will be suffering from depression or anxiety at a given time. Also children and teenager who suffer from depression and anxiety are more likely to experience mental health problems as adults. This can have an impact on many other outcomes such as education and employment, overall health and quality of life.

Depression and anxiety are therefore a major public health concern. This project will use information you have given to Children of the 90s in questionnaires and at focus clinics. The research will also use GP records relating to depression and anxiety (if there are any).

Previous research has shown that smoking and binge drinking in pregnancy are both associated with a number of different psychological and behavioural outcomes among children. This research will help us understand whether smoking and binge drinking in pregnancy increases the risk of developing depression or anxiety as a teenager. This information is important because, if a link is found, it will further highlight the long term effects of smoking and drinking during pregnancy.

Findings from this research may improve health policy by raising awareness about the dangers of smoking and drinking during pregnancy. In the long term this may help to reduce rates of depression and anxiety among children and teenagers. In this way we hope to improve people’s lives.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used? GP records relating to depression and anxiety
The project start date: 1st February 2016

Remember: you need to let us know by the date given above if you do not want your records used in this way.

The effect of substance use in adolescence on mental health

Adolescence is a time when people experience lots of change, both physical changes and social changes. This is the age when some people start using substances such as alcohol, tobacco, and cannabis. Adolescence and young adulthood are also the time when some people first experience mental health difficulties. Adolescents in the UK have amongst the highest rates of substance use and depression in the developed world. However, although substance use and mental health problems often occur at a similar age, it is not fully understood whether substance use is a cause of mental health problems.

Mental health problems, such as schizophrenia, depression, and anxiety, can have a serious impact on a person’s quality of life. It is therefore important that research studies be done to help better understand the causes of mental health problems in young people, and how they can be prevented. Children of the 90s can use information you have given in questionnaires and at focus clinics to investigate how the use of the three most common substances (alcohol, tobacco, and cannabis) in adolescence affects mental health. This research project will also use GP records, and hospital and community care data, relating to mental health problems (if there are any). As always, you will never be identifiable to the researchers who use information from your records.

Findings from this research will expand knowledge on how substance use can affect young people’s mental health. These findings may improve health policy, and in the long term this may help to reduce rates of mental health problems in young people and ultimately improve people’s lives.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used? GP, hospital and community care records relating to mental health
The project start date: 1st February 2016

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Chlamydia testing, infection, and related health problems in young people

Chlamydia infection is one of the most common sexually transmitted infections in the UK. We believe up to one in five young people are infected with Chlamydia without knowing. Untreated Chlamydia can have serious health consequences. Because of this, England has a National Chlamydia Screening Programme and all sexually active young people aged 15-24 years are eligible for testing annually and on changing partner. We don’t currently have reliable information on what proportion of young people are tested, or whether the screening program reduces the risk of the main health problems associated with Chlamydia infection (pelvic inflammatory disease, ectopic pregnancy, and reduced fertility).

Because of this we need research to answer these important questions and Children of the 90s could help. This project will use information you have given to Children of the 90s in questionnaires and at focus clinics. The research will also use GP records and hospital data relating to sexual health (if there are any). As always, you will never be identifiable to the researchers who use information from your records.

Findings from this research will contribute to increasing our understanding of how to improve sexual health. This should influence health policy, and in the long term we hope will help to improve the health of young people.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used? GP and hospital records relating to sexual health
The project start date: 1st February 2016

Remember: you need to let us know by the date given above if you do not want your records used in this way.

Investigating the association between IQ and self-harm

One in five people have harmed themselves by age 20. Self-harm is a sign of people’s distress. Self-harm is also a strong risk factor for later suicide. Half of all people who take their own lives have previously self-harmed.

Self-harm is therefore a major public health concern. This project will use information you have given to Children of the 90s in questionnaires and at focus clinics. The research will also use hospital self-harm records and self-harm data from GP records (if there are any).

This research will improve our understanding of who is more or less likely to self-harm. In particular, it will provide valuable findings about whether those with lower IQ or higher IQ scores are at greater risk of self-harm and whether or not this depends on whether the person also has suicidal feelings. We also want to know whether males and females are different in terms of who is more or less likely to self-harm. This information is of critical importance in order that interventions to prevent self-harm are targeted at the right people.

Findings from this research may improve health policy by raising awareness about self-harm. The findings could lead to increased help for people who self-harm. In this way we hope to improve people’s lives.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used? Self-harm records from English hospitals and GP records
The project start date: 1st April 2015

 Remember: you need to let us know by the date given above if you do not want your records used in this way.

If being a preterm baby impacts on later exam results

Most women go into labour after being pregnant for between 37 and 42 weeks. Babies who are born before the 37th week of pregnancy are known as 'pre-term babies'. This research investigation aims to establish if preterm babies, as a group, have lower 'Key Stage' school exam results than people who were born after 37 weeks of pregnancy.

Findings from this research may improve the understanding about preterm birth and exam results. If so, this new information could be used to help target teaching resources to those in most need. In this way we hope to improve the public good.

Who will carry out the research? Researchers at the University of Bristol
Whose records are being used? The Children of the 90s young adults
Which records are being used? NHS pregnancy and birth records and Department for Education school exam records
The project start date: 3rd April 2015

Remember: you need to let us know by the date given above if you do not want your records used in this way.

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