Registry of Sarcoidosis Associated Pulmonary Hypertension

• Research type

  Research Study

• Full title

  Registry of Sarcoidosis Associated Pulmonary Hypertension (ReSAPH)

• IRAS ID

  162717

• Contact name

  Patrik Pettersson

• Contact email

  P.Pettersson@rbht.nhs.uk

• Sponsor organisation

  Royal Brompton Hospital

• Duration of Study in the UK

  2 years, 11 months, 28 days

• Research summary

  Pulmonary hypertension is increasingly recognized as a significant contributor of morbidity and mortality in patients with sarcoidosis. Pulmonary hypertension can be a progressive, fatal disease if untreated, although the rate of progression is highly variable. Prospective studies have suggested that at least ten percent of all sarcoidosis patients have pulmonary hypertension, while in the group of sarcoidosis patients awaiting lung transplantation the prevalence is increased to 73.8%.
  There is a variety of potentially contributing pathophysiological mechanisms to the development of sarcoidosis associated pulmonary hypertension and lack of randomized controlled treatment trials, the optimal management and treatment in patients with SAPH remains unclear and challenging.
  A research registry of sarcoidosis associated pulmonary hypertension has been set-up by the University of Cincinnati. In collaboration with international centres we would like to contribute anonymised clinical data to this registry. This registry has been set-up to characterize the demographics, clinical course, hemodynamics, pulmonary physiology, and disease management of sarcoidosis associated pulmonary hypertension and features will be compared between international sites. Clinical data will be collected from routine visits and procedures of patients, along with two Quality of Life Questionnaires and data added anonymously to the registry. No intervention and extra medications will be added to the normal and regular clinical management. There is no another direct benefit to research participants. However, the establishment of the prevalence, clinical course and management of patients with sarcoidosis associated pulmonary hypertension will allow us to optimize our management in this particular group of patients.

• REC name

  North East - Tyne & Wear South Research Ethics Committee

• REC reference

  15/NE/0044

• Date of REC Opinion

  30 Jan 2015

• REC opinion

  Favourable Opinion