Silicosis or silica associated lymphadenopathy
This is an observational study. The aim is to recruit all patients with silicosis from the UK diagnosed since 2020. The UK Silicosis Registry will be hosted at Imperial College London using the REDCap platform. Data from clinical health care visits, and from specific questionnaires, will be entered on currently known and all new cases of silicosis from GORDS centres. GORDS is a well-established UK-wide network of specialist occupational lung disease centres (at Royal Brompton Hospital in London and in Birmingham, Manchester, Liverpool, Sheffield and Newcastle). In the future, cases may be included from specialist interstitial lung disease clinics at other centres if appropriate. Data will be collected on the following domains. • Demographics • Clinical assessment including (but not limited to) o smoking history o current employment status o comorbidities o measure of breathlessness using modified Medical Research Council dyspnoea scale • Pulmonary function test results • Chest CT (computed tomography) scan results • Blood test results including serum angiotensin converting enzyme, connective tissue screen and QuantiFERON • Occupational history • Quality of Life data using the WHO-QOL BREF questionnaire The lead clinician at each contributing site will enter data into the Registry using REDCap at the time of their appointment. Data will be entered into Reigstry at baseline and at subsequent appointments again by their local lead clinician to allow longitudinal analyses. Patients with silicosis will be approached by their usual clinical care team and invited to take part in the Registry. They will be provided with participant information sheets and consent forms ahead of their clinic visit. Informed consent and completion of the Quality-of-Life questionnaire will take place at their routine appointment. Pseudoanonymised data will be added to the Registry following the clinic visit by the local clinical team. Data analyses will then be carried out by the C
1. Patient reviewed in a specialist occupational lung disease service 2. Diagnosis of silicosis due to occupational exposure with diagnosis based on: 2.1. History of occupational exposure to respirable crystalline silica 2.2. CT changes consistent with silicosis or silica-associated lymphadenopathy
1. Patients under the age of 18 years 2. Radiological changes of silicosis without appropriate exposure history 3. Patients where there is diagnostic uncertanty 4. Patients who do not give or are unable to give consent