Long COVID in Children and Young People (The CLoCk Study)

To determine the symptoms of Long COVID-19, define Long COVID-19 and determine how many young people suffer from Long COVID-19.

Final report

GOSICH-PPP-CLoCk Final Report_December 2024.pdf

How we use your data

Privacy policy

Message for participants

You have been an important part of our Children and Young people with Long COVID (CLoCk) study. Your contribution has led to many important discoveries about the impact of COVID-19 and the pandemic on children and young people.

Although several years have passed since the COVID-19 pandemic, it is important to study its long-term impacts. We would like to do this in a way that is easier for you and does not require you to regularly complete questionnaires.

What we plan to do

You may remember that when you agreed to take part in CLoCk, you provided your consent for information about you that is held by the UK Health Security Agency to be used to provide further data to the study. The UK Health Security Agency has information about you (and everyone else in England) as they are responsible for monitoring diseases like COVID-19 across the country.

We are now planning to use this information (which includes your name, date of birth, NHS number) to ‘link’ your study records to your health and education records. The health records are held by the UK Health Security Agency and the education records are held by the Department for Education.

How we will ‘link’ study records

More specifically, the UK Health Security Agency will link study records to a database of hospital attendances. In order to identify the correct person in the database, they will use identifiable information (e.g., your name, date of birth, NHS number) to ‘link’ the records. As the education records are held by the Department of Education, the UK Health Security Agency will securely transfer the information about you to the Department of Education. The Department of Education will then ‘link’ the information to their education records. They will send the education records back to the UK Health Security Agency, but will replace any identifiable information with an ID number. The UK Health Security Agency will combine the education records with the hospital records and replace any further identifiable information with the ID number. This data, which will not include the identifiable information about you, will then be securely shared with the CLoCk study team based at University College London. The study team at University College London will then use this information to understand the long-term impacts of COVID-19 and the pandemic on health and education. Once this process is completed, the original file containing identifiable information about you will be deleted by the UK Health Security Agency within six to twelve months.

We want to assure you that only authorised members of our team will access information about you, and this will only be done for the purposes outlined here. We plan to do link data for all participants in the study.

For more information about how University College London uses data for research, please visit this page: https://www.ucl.ac.uk/legal-services/privacy/ucl-general-privacy-notice-participants-and-researchers-health-and-care-research-studies

Your options

You do not have to provide any details or complete any forms for the ‘linking’ to happen. CLoCk has received approval from the Health Research Authority under Section 251 of the National Health Service Act 2006, which permits the use of patients’ medical information for this study. This approval was given following advice from the Confidentiality Advisory Group on behalf of the Secretary of State for Health and Social Care.

However, if you do not wish for us to use your information in this way, then you are free to opt out of this part of the study. To opt out, please contact us at ich.clock@ucl.ac.uk or 020 7679 8336. If you are happy for your information to be used in this part of the study, then no further action is required.

If you have any questions or need support, feel free to contact us at ich.clock@ucl.ac.uk or 020 7679 8336.

Yours sincerely

Children and Young People with Long Covid study (CLoCK) team

Last updated: 3 February 2025 (version 1.0)