Behind the scenes FSR is aiming to drive research forward. One way we do this is through our Clinical Studies Network (CSN). The CSN is a network of research sites, connected through FSR, that work together to take on large clinical studies. The main goals are to
- Collaborate on studies
- Test the effectiveness of different treatments
- Measure the impact of re-purposed drugs
- And test new medications in a way that requires less time and money
Previous CSN Study
In its first cycle, the CSN conducted a study that looked at the different presentations of sarcoidosis and monitored the burden of the disease. The study wanted to observe the different ways sarcoidosis presents over time. By studying this the CSN would be able to see how those different presentations create unique burdens in patients’ ability to function, emotions, relationships, and employment. A part of the study focused on the best way to receive patient reported outcomes (PROs) and tested different methods through types of patient surveys, as well as fitbits. Although this study is now closed for enrollment, the CNS sites are still collecting data and doing ongoing analysis.
2018-2020 CSN Study
This summer the 12 lead investigators from the new cycle of CSN sites came together to decide on the next CSN Core study. The goal for the next study was to discover an effective diagnostic or treatment plan that fits the needs of patients as well as FSR. After discussing all of the options the CSN steering committee decided to take on a study focusing on cardiac sarcoidosis.
CSN Steering Committee
This new observational study, nicknamed the PapLand Protocol, will be conducted at all 12 of our CSN sites in early 2019. This protocol will combine the ideas from Dr. Daniel Culver and Dr. Muhunthan Thillai to look at the mechanism behind standard cardiac screening and assessment. The basis of the study will be the collection of large amounts of patient data. This will allow CSN investigators to see how effective current screening and assessment methods are.
The decision to focus on cardiac sarcoidosis will help the potentially 20-30% of sarcoidosis patients with cardiac involvement (rates based on postmortem incidence). Studies like the PapLand Protocol will bring high quality data to a group of sarcoidosis patients that desperately need better disease detection and treatment methods.
To learn more about the impacts of cardiac sarcoidosis read FSR’s Cardiac Sarcoidosis blog or the Cardiac Sarcoidosis FAQs blog written by Dr. Edward Miller, MD of Yale.