The prevalence, incidence, and mortality of Primary Raynaud's Phenomenon in England, United Kingdom.

Study type
Protocol
Date of Approval
Study reference ID
24_003742
Lay Summary

Primary Raynaud’s Phenomenon is a condition impacting the blood flow around the body, often causing colour changes in areas like the fingers and toes. It typically occurs when a person is either cold, anxious, or stressed and can impact anyone. Primary Raynaud’s Phenomenon accounts for 80-90% of Raynaud’s cases and is more common among women and minority ethnic groups. The typical age of onset ranges from 15-30. It is a condition that develops by itself and can lead to pain and discomfort impacting one’s quality of life. Currently, to our knowledge, there are no detailed up-to-date studies addressing the prevalence (total number of cases at a given time), incidence (number of new cases per year), and mortality (number of deaths) of Primary Raynaud’s Phenomenon in England, United Kingdom.

Therefore, the aim of the proposed study is to determine the prevalence, incidence, and mortality of Primary Raynaud’s Phenomenon in the population of England, UK. Cases of Primary Raynaud’s Phenomenon will be identified using electronic medical records from the Clinical Practice Research Datalink (CPRD). Results will be presented by age, sex, ethnicity, socio-economic status, and geography. This study’s findings will provide evidence for the management of Primary Raynaud’s Phenomenon in the population and will help improve patient and public health.

Technical Summary

Primary Raynaud’s Phenomenon is a condition that affects blood circulation. It is more common among the female population and minority ethnic groups. In the English population, data on prevalence, incidence, and mortality on Raynaud’s remains disparate and fragmented. This study aims to examine the prevalence, incidence, and mortality of Primary Raynaud’s Phenomenon in England, UK from 1998-2023. We will report the rates stratified by age, sex, ethnicity, socio-economic status (quintile of the Index of Multiple Deprivation) and geography (local constituents of England).

Cases of Primary Raynaud’s Phenomenon will be identified through read codes in CPRD (those who have Raynaud’s [total] excluding those who have secondary Raynaud’s i.e., myositis…). The annual prevalence of Primary Raynaud’s Phenomenon will be calculated for all patients in the CPRD database meeting the definition for Primary Raynaud’s Phenomenon on 1st January each year divided by the denominator of all patients contributing data to the CPRD on 1st January each year multiplied by 100,000. The annual incidence of Primary Raynaud’s Phenomenon will be calculated using the number of new cases according to our definition of Primary Raynaud’s Phenomenon, divided by the total person-time of follow-up (denominator) multiplied by 100,000. Mortality will be (ascertained date of death recorded in the ONS mortality). Cause of death (recorded in ONS as an ICD-10 code) will be categorised into the leading causes of death: Dementia and Alzheimer's disease, ischaemic heart diseases, Chronic lower respiratory diseases, cerebrovascular diseases, Malignant neoplasm of trachea, bronchus and lung, other malignancies, and other causes following the ONS death summary statistics methodology (1).

These results will provide new knowledge which will inform updates to clinical guidelines and commissioning of health services, resulting in improvements in the health for people with Primary Raynaud’s Phenomenon.

Health Outcomes to be Measured

There are three main outcomes to be measured annually – (1) Prevalence; (2) Incidence; (3) Mortality (all-cause mortality and cause-specific mortality).

The data will be linked with ONS data for all-cause and cause-specific information.

Collaborators

Fiona Pearce - Chief Investigator - University of Nottingham
Anthony Chen - Corresponding Applicant - University of Nottingham
Matthew Grainge - Collaborator - University of Nottingham
Peter Lanyon - Collaborator - Nottingham University Hospitals
Stephanie Lax - Collaborator - University of Nottingham

Linkages

ONS Death Registration Data;Patient Level Index of Multiple Deprivation