What is the South London Registry of Cardiovascular Diseases?
The SoLoR-CVD Registry is a research database that has been created using information gathered during the routine delivery of healthcare at two London hospitals – King’s College Hospital (KCH) and Guy’s & St Thomas’ (GStT.) These hospitals serve a large and diverse population across central and south London and the wider south-east of England.
The SoLoR-CVD Registry will include approximately 150,000 individual patients who have been treated for a cardiovascular issue (e.g., heart attack, abnormal heart rhythm, valve disease or heart failure) at either hospital, between April 2012 and March 2022. This will make it one of the largest available contemporary datasets, and an invaluable resource for researchers.
Why is the SoLoR-CVD Registry needed?
Cardiovascular diseases remain the most common cause of adult death and sickness in our city, and is a major contributor to health related inequality in the United Kingdom. CVD disproportionally affects those with lowest incomes, and people from South Asian and Black communities. These patients are under-represented in clinical research, despite suffering the greatest burden of disease.
Our registry will capture the experience of our local population and allow us to better understand the causes of cardiovascular disease, how it develops over time and the impact of currently available treatments in a large, real-world population.
How is the data collected & what will it be used for?
When people come to hospital, information is collected to assist clinicians to make a diagnosis and guide management of your care. A detailed record of your symptoms, investigation results, procedures and medication-use is recorded. This is stored in your electronic health records within our hospitals.
Our highly experienced research team can take the information from your health record and organise it so that it can be used for research. Led by Dr Nilesh Pareek, a consultant Cardiologist at King’s College Hospital, the research team will use this information to investigate the factors that increase risk of developing cardiovascular disease; assess how cardiovascular disease changes over time; and how effective currently available therapies are in our patients.
Will this affect my care?
The data in the SoLoR-CVD Registry was generated during routine medical care. This information was available to your medical team and would have been used to guide your treatment. Our research will not assess the care of individual patients, but aims to improve our understanding of risk-factors for cardiac disease, and the effectiveness of treatments in different patient groups.
Who will be able to see my data?
When the research team extract the data from your medical records, information such as your date of birth and NHS ID is removed from the research registry and stored separately in a dedicated ‘linkage file’. This file will be used to ensure that when data from KCH and GStT is combined, individuals will only be entered once.
As many of our patients will receive treatment outside of KCH and GStT, the research team will share this linkage file with a trusted 3rd party at NHS England, who will provide information from relevant national datasets. Once NHS England have provided that information, and the data is returned to us and entered in the Registry, NHS England will delete the linkage file. A copy of the linkage file will be stored for 5 years on a dedicated, password protected and encrypted NHS computer at KCH – this will only be accessible to the Chief Investigator (CI) and Clinical Informatic Lead. After 5 years, the CI will delete the linkage file.
The Registry data will be held separately to the linkage file. Information on date of birth, date of death and address is present in the Registry, but is truncated and weakened – this allows us to perform analyses based on your age and local area, without needing to store your full date of birth or address.
The research team will be the only people who will be able to access the final research database. Other researchers from our institutions will be able to request access data that will enable them to answer specific research questions. Requests will be reviewed by our Oversight Panel of senior researchers and a lay representative – they will be assessed for their scientific merit and for the risk of patient re-identification. If successful, researchers will be issued with the minimal amount of information to allow them to address their research question.
To ensure that output from the SoLoR-CVD database is of the highest quality, research teams may need to collaborate with external experts, either to provide access to novel methods of analysis, or independent validation of research methods. This would involve the sharing of minimal required and de-identified datasets, with other institutions (i.e., other NHS researchers, university researchers, or industry experts.)
All potential data-sharing collaborations would require a formal review and approval from the Information Governance Office at KCH/GStT. For any industry or non-UK collaboration, a formal data-sharing agreement, approved by the Trust Caldicott Guardian office, would be required.
External collaborators would be required to destroy all data once they have performed their analysis.
Where will the data be stored and for how long?
Data will be extracted from the patient records onto dedicated NHS, password protected and encrypted computers. Data may be transferred between computers using secure connections within the NHS firewall. Once the database has been finalised, it will be stored alongside any generated datasets, on a dedicated password-protected and encrypted NHS computer. All access to the database will be audited and regular inspections will be performed to ensure that we are compliant with all local and national guidelines for the storage and processing of healthcare related data.
Will patients and members of the public be involved in the research?
We will have a Public & Patient Oversight Group consisting of five people with diverse backgrounds including personal experience of cardiovascular disease, as a carer for someone with cardiovascular disease or of working with healthcare related data. They will act as an intermediary between the researchers and the patients we serve to ensure that research is targeted to serving the needs of our local population. They will nominate up to three lay representatives who will join the Registry Oversight Committee.
Who is organising and funding this registry?
The doctor in charge of this registry is Dr Nilesh Pareek. The registry is funded by King’s College Hospital Research and Development Grant.
What if I don’t want to be included in the registry?
If you want further information, or if you do not want your data to be included in the registry, contact us on:
E-mail: kch-tr.ResearchNurses@nhs.net
Tel: 0203 299 1285
If you have previously requested that your data is not used for the purposes of research via your GP and the NHS Data-opt out scheme, you will be withdrawn from the database.
SoLoR-CVD 