PULSE: PULmonary hypertenSion rEsearch database
Research type
Research Database
IRAS ID
350356
Contact name
Laura Price
Contact email
Research summary
PULSE: PULmonary hypertenSion rEsearch database
REC name
South West - Central Bristol Research Ethics Committee
REC reference
25/SW/0050
Date of REC Opinion
30 May 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
We are creating a national research database to improve care for patients with pulmonary hypertension (PH) caused by interstitial lung disease (ILD) or sarcoidosis. This database will collect anonymous, linked data from patients treated at seven National PH Centres across the UK.
The data collected will come from existing clinical records and will be anonymised, so no personal details can identify individual patients. Patients who have chosen to opt out of data sharing will not have their information included. Posters and leaflets in clinical areas will inform patients about the database and how to contact the study team if they wish to opt out. Only information gathered during routine clinical care will be included, and no extra tests or appointments are needed.
The research database follows strict data protection laws, including the Data Protection Act 2018 and GDPR, to ensure patient confidentiality. By participating, patients can contribute to better understanding and treatment of PH in ILD and sarcoidosis.
Research programme
We are creating a national registry to help improve care for people with pulmonary hypertension (PH) caused by interstitial lung disease (ILD) or sarcoidosis. Pulmonary hypertension is a serious condition that makes it harder for the heart and lungs to work together. When it occurs in people with ILD and sarcoidosis, managing the disease can be especially challenging. There is currently no central source of information on all patients with this condition. This registry will collect important medical information from patients across the country to better understand this condition and to find ways to improve diagnosis, treatment, and outcomes.
Research database title
PULSE: PULmonary hypertenSion rEsearch database
Establishment organisation
Royal Brompton and Harefield Hospitals part of Guy's and St Thomas NHS Foundation Trust
Establishment organisation address
Royal Brompton Hospital, Sydney Street
London
SW3 6NP