When you get sick, the last thing you want to worry about is endless appointment dates, inexperienced doctors who don’t communicate, and conflicting recommendations which make choosing the best treatment plan difficult. With centers popping up around the country who claim to be experts, how can you know what institutions actually have the expertise to help you?
FSR is proud to introduce Sarc-ID, an institutional designation system which will help you find the sarcoidosis clinic best equipped to meet your unique needs. With expert-determined criteria and easy to interpret levels of recognition, through Sarc-ID, we present to you the tools to find centers that have collaborative experts, patient-centered care, and coordinated appointments so you can focus on what matters most – getting your life back.
Traditionally, physicians with knowledge of sarcoidosis and expertise in treating complex cases with which many patients present are few and far between. FSR routinely aims to bridge the gap between patients and knowledgeable specialists by providing resources such as the FSR Physician’s Directory and individualized coaching for patients to help them navigate health systems. These resources, however, are not enough for those patients with complex, systemic manifestations of the disease who seek coordinated care options catered to their unique needs. Oftentimes a patient will call FSR willing to spend precious resources to get to the best institution equipped to treat them, however there have never been the tools in this space with which patients can navigate this decision. The issue is two-fold:
- Patients are desperate to find specialized centers and are willing to spend their often limited resources and travel great distances to get there.
- Institutions, with or without the specialized clinical care, research, and educational services patients need, claim and market their expertise to patients.
Progress
In 2018, FSR Sarc-ID will fully come to life thanks to the generous support of Celgene who selected FSR as an Innovation Impact Award Winner. The program aims to provide patients with a platform to compare the services provided at institutions and aid in treatment decisions. Guided by the patient voice and through active and meaningful collaboration among all stakeholders including clinicians, investigators, institution leaders, and key opinion leaders in the sarcoidosis space such as FSR and the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG), the program will transform the sarcoidosis care experience and provide a model for other disease groups.
Sarc-ID reduces the frustration by providing clear-cut information via:
Institutions have and may continue to apply for recognition as a sarcoidosis center year-round. Any center that applies that shows commitment to sarcoidosis via membership with FSR and WASOG are approved and can be found on our website. While they vary greatly in terms of the levels of expertise and services, FSR believes in providing patients all possible options so they can find the best care option for their unique case. While some patients will prefer to or should receive care at a top center as their preference or disease state dictates it, others have less complex cases which can be well managed at less specialized centers and/or prefer to receive care closer to home.
The first round deadline for the application for recognition as a Sarcoidosis Center of Excellence was September 1, 2019, 55 centers applied for recognition as a Sarcoidosis Center of Excellence in the first round.
An international committee of the leading experts in sarcoidosis and patients from around the world were convened to review applications, prioritize the importance of various center features, and award recognition as a Center of Excellence. The committee included:
- Robert Baughman (co-chair) – United States
- Jan Grutters (co-chair) – Netherlands
- Dr. Arata Azuma – Japan
- Dr. Parthasarathu Bhattacharyya – India
- Dr. Daniel Culver – United States
- Dr. Marjolein Drent – Netherlands
- Dr. Ennis James – United States
- Dr. Elyse Lower – United States
- Dr. Antje Prasse – Denmark
- Dr. Paolo Spagnola – Italy
- Dr. Dominique Valeyre – France
- Dr. Violetta Vucinic – Serbia
- Dr. Athol Wells – United Kingdom
- Dr. Marlies Wijsenbeek – Netherlands
- Kelli Beyer (FSR Patient Advocacy Leader) – United States
- Sandra Detter (Patient Representative) – United States
- Sebatian Opitz (Patient Representative) – Italy
- Jessica Reid (Patient Representative) – United States
- Jack Richardson (Sarcoidosis UK Patient Advocacy Leader) – United Kingdom
Of those 55 applications that were reviewed, approximately half will receive Center of Excellence recognition for two years which will be announced at the WASOG Annual Meeting in Yokohama, Japan in October 2019.
Future Directions
Now that criteria and the inaugural WASOG/FSR Sarcoidosis Centers of Excellence have been established, FSR is working to change the way patients choose a care center. In 2020, FSR will launch a brand new Sarcoidosis Center Finder on our website. Patients will be able to compare centers, view specialists, see appointment appointment information, and more so they can make the best informed decision about their care plan.
We are excited to continue our work to ensure this program reduces the burden of living with sarcoidosis for patients and their families. As more information about recognized is available, we will share it with our community.