![Sarcoidosis Advocacy and Research Initiative at UNSW Sarcoidosis Advocacy and Research Initiative at UNSW](/content/dam/images/medicine-health/general/news/2024-02-sari/2024-02-board-sarcoidosis-advocacy-and-research.cropimg.width=335.crop=video.jpg)
SARI is a multidisciplinary research initiative involving clinicians from POW, St Vincents and the Victor Chang Research Institute and data scientists and researchers at UNSW was launched in late 2023 to promote research on the causes of Sarcoidosis and to find a cure.
Sarcoidosis is a multisystem, (heart, lungs, skin, eyes, brain etc) immune-mediated granulomatous disorder that affects the lungs in more than 90% of patients, resulting in interstitial lung disease (ILD). Around one in ten patients will die from the disease within 10 years, with pulmonary disease being among the most common reasons for death.
The incidence and prevalence of Sarcoidosis in Australia is not known, but there could be between 5-20 thousand Australian citizens suffering from Sarcoidosis. Yet there has never been a Research grant awarded to study Sarcoidosis in Australia and no clinical trials have ever reached Stage III anywhere in the world!
No new drugs have been approved by the United States (US) Food and Drug Administration (FDA) for sarcoidosis since the corticotropin injection in 1952 (prior to current health authority guidelines). Oral corticosteroids (OCS), especially prednisone, are now the first line of treatment for pulmonary sarcoidosis Since sarcoidosis is often diagnosed in early adulthood, many patients remain on OCS for years.
The toxicity of cumulative glucocorticoid exposure (dose × duration) has been well recognized in many diseases, and sarcoidosis is no exception. Long-term corticosteroid use is associated with significant side effects including substantial weight gain, development of insulin resistance, osteoporosis, risk of infection, and overall reduced quality of life. Not surprisingly, an important end point of any Sarcoidosis trial would be the ability to get patients off their oral corticosteroids regime!