Using your official records in Children of the 90s research

You can help Children of the 90s to build a better future through contributing to ground-breaking research on the causes of the world’s most important health and social problems.

Using information about you from your official records (including your health and education records)

Children of the 90s would like to follow your health and life events by linking to your official records; such as those held by the NHS, the education system and the benefits and earnings department. For some of you this will also include information about criminal convictions and cautions. We call this way of collecting information ‘data linkage’.

Data linkage gives us information that is difficult to get using questionnaires or at a clinic. Some of it you wouldn’t even know, for example the precise dose of an antibiotic you were given as a baby.

How does record linkage work?

This short animation helps explain how health records are used in general University based research:

#DataSavesLives Animation from Connected Health Cities on Vimeo.


These documents help explain how record linkage works in Children of the 90s:

There is more information on the securing your records page, and our page describing the type of records we link to.

If you want to let us know your decision on how your records are used – including how you can OPT-OUT in general please:

  1. think about all the information, get in touch if you have any questions
  2. let us know what you decide by returning the form we sent out in the pack (we can send you another form if you let us know) - Data Linkage Decision Form (PDF, 166kB)
  3. remember, if you do not want us to use your official records in our research then it is important that you OPT-OUT.

If you want to stay informed as to how we are using your records, and to OPT-OUT of specific research investigations, then:

  1. have a look at the projects we are running, get in touch if you have any questions
  2. let us know if you want to OPT-OUT of any of these, but we need to know this within a set time period as your information cannot be removed from a project once it has started.

You can call, email or send back a copy of the form above. You do not need to tell us why you don’t want to take part in this bit of Children of the 90s, and we appreciate that people have different views on how their personal information should be used. It is your decision.

Remember: we’re very careful to keep all of your information confidential. With everything we do at Children of the 90s we want to protect your privacy and commit to using the information you have provided in an appropriate way. Read about our commitment to you.

The UK Longitudinal Linkage Collaboration

 Children of the 90s is part of the UK Longitudinal Linkage Collaboration. This is a national Trusted Research Environment run by the University of Bristol. It brings together the de-identified study data and linked records of participants from over 20 UK longitudinal studies. Researchers approved by Children of the 90s are able to access and use data within the UK LLC but are not able to remove data from this environment.
You can read more about the UK LLC here.
You must let us know if you do not want your data used in this way

What to do if you change your mind

Taking part in the study is voluntary, you are free to do as much or as little as you like. If you change your mind about taking part in some or all of Children of the 90s then let us know.

Feel free to get in touch. If you want to talk about this or need more information then feel free to get in touch. Thank you for taking the time to think about this, remember what you do can really make a difference!

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