In many ways, this was a transformative year at the Sjögren’s Foundation. The Foundation experienced a leadership change, made considerable research investments, saw further advances in new therapeutics, expanded our reach to educate patients, and helped create greater awareness in the medical community about the systemic nature of Sjögren’s. And we did all of this while continuing to provide valuable support to our patients and families, especially as we continue to contend with COVID-19.
The Sjögren's Foundation was proud to announce Janet E. Church as the organization’s new President and Chief Executive Officer. A seasoned technology marketing executive with a unique combination of corporate, agency, consulting, and non-profit experience, Janet is also a Sjögren's patient who served on the Foundation’s Board of Directors for eight years and was Board Chair for her final three years.
The Foundation continues to lead the charge to change the language around Sjögren's and redefine it formally as a disease and not a syndrome while working to ensure that the seriousness of the disease and the significant impact that Sjögren’s has on patients is appropriately communicated. The Foundation developed a standardized language document for Sjögren's which will be an instrumental document for all programs.
Additionally, Kathy Hammitt, Vice President of Medical & Scientific Affairs for the Foundation, had editorials regarding the patient perspective and “Syndrome vs. Disease” published in the peer-reviewed journals Clinical and Experimental Rheumatology and Arthritis & Rheumatology. The Foundation has also expanded our relationship with the American College of Rheumatology (ACR) to ensure Sjögren's is given better visibility.
The Sjögren's Foundation continued to be at the forefront to help guide our patients through the vast amount of information needed to navigate COVID-19. As we followed developments regarding a COVID-19 vaccine, the Foundation established a COVID-19 Vaccination Committee made up of rheumatology and immunization experts and led by Dr. Alan Baer, a leading rheumatologist, chair of the Sjögren's Foundation’s Medical & Scientific Advisory Council, and Director of the Jerome L. Greene Sjögren’s Clinic at Johns Hopkins University. The Vaccination Committee issued various recommendations throughout the year on vaccines, 3rd doses and booster shots. They also provided guidance on an extensive FAQ about the COVID-19 vaccinations and Sjögren's that the Foundation posted on the website.
In June, Dr. Baer provided an update on COVID-19, vaccines, and Sjögren's at the 2021 National Patient Conference which was then offered to everyone on the Foundation website. The Foundation also hosted two webinars with Dr. Cassandra Calabrese, CO of the Cleveland Clinic in March, and November. The webinars provided current information related to COVID-19 and vaccinations and address questions about the safety and effectiveness of the COVID-19 vaccines. The November webinar specifically addressed the issue of booster shots. Dr. Calabrese also took part in a special “Ask the Doctor” article in the May/June Conquering Sjögren's newsletter.
The Foundation offered educational conferences designed to help patients take control of their health and gain a better understanding of their disease. This June, the Foundation held the National Patient Conference once again as a virtual event, and we welcomed more than 900 registrants for the two-day program. In November, we held a one-day virtual patient conference focused on the nervous system with over 1,000 registrants.
The Foundation continues to publish our popular patient newsletter, Conquering Sjögren’s, which was expanded to provide even more content and we recently updated our blog on our website that features articles from experts, additional patient information, and tips and suggestions for dealing with different symptoms. The Foundation also released a 2nd season of Exploring Sjögren's, the Foundation’s YouTube video series that gives an in-depth look into the disease, with episodes on fatigue, disability, and pediatric Sjögren's.
The Sjögren's Foundations manage 62 support groups and 41 of them held virtual ZOOM meetings during the pandemic. As some support groups go back live, the Foundation will always provide a virtual meeting option to reach a broad range of patients. The Foundation also manages four additional focused support groups for patients under 40, men with Sjögren's, childhood Sjögren's, and spouses/partners.
We are also grateful for the 107 patient support volunteers around the country that we refer patients to when they need help finding local resources. This is a resource that allows patients to speak to fellow patients in their area who understand what they are going through. Additionally, the Foundation website, www.sjogrens.org, remains the top source for relevant and valuable Sjögren’s information for patients, their families, and healthcare providers.
The Foundation offered the very first Childhood Sjögren's Conference in September for families and healthcare providers. The conference featured 8 different speakers and was attended by 100 participants.
The Foundation is also funding a new Childhood Sjögren’s Registry. This is a long-term study that will be housed at the Mayo Clinic and is being created by the International Workgroup for Childhood Sjögren’s (in which the Foundation is included). The goal is to collect data about symptoms and changes of childhood Sjögren’s over time and into young adulthood. Most importantly, it could potentially map out patterns of the disease and identify new clinical questions to address. In November, the Foundation hosted a Childhood Sjögren's Study Group at the American College of Rheumatology’s (ACR) annual meeting. We also continue to provide a childhood support group and closely interact with families to discuss needs in Childhood Sjögren's.
The Foundation was extremely proud to complete the first-ever clinical practice guidelines (CPG) on pulmonary manifestations of Sjögren’s which were published in the prestigious journal, CHEST, in February. These are the most robust guidelines from the Foundation yet with 52 management and treatment recommendations. The increased interest in pulmonary complications in Sjögren's has been overwhelming. To date:
- There have been 14,000 downloads of the CPG from the CHEST site
- The CPG has been cited in nine (9) professional journal articles
- They were presented at two (2) scientific conferences and two (2) professional conferences
- There have been a combined 30,000+ webpage views on the Foundation’s website (news stories, blog, main CPG page)
-They have been covered in trusted medical outlets including Medscape which has over 20 million views per month
This year, the Foundation began moving forward with the peripheral nervous system (PNS) clinical guidelines. This has included finalizing the methodology approach, establishing the areas that will be addressed and developing clinical questions for each, and updating the literature search.
The Sjögren's Foundation developed a new comprehensive Living with Sjögren's patient survey to gain insight and better understand the experiences of Sjögren's patients, including the wide range of symptoms and the impact on a patient’s daily living. The survey was open to adult patients (18+) living in the United States and with a formal Sjögren's diagnosis. There were 3,622 surveys completed and we have already begun analyzing the data. This survey will help the Foundation provide researchers with valuable information about the variety and severity of what Sjögren’s patients experience, it will create greater awareness in the Sjögren’s community at-large, and it will educate regulatory agencies and pharmaceutical companies about the need for new and systemic therapeutics for Sjögren’s.
Every year, the Sjögren’s Foundation Research Grants Program awards a High Impact Grant for $75,000 and a Pilot Grant for $25,000. The Program places a high priority on both clinical and basic scientific research into the cause, prevention, detection, treatment, and cure for Sjögren’s, with opportunities open to both junior and senior-level investigators. These grants are exploring critical aspects of the disease with cutting edge technology that will further advance the community’s understanding of this complex disease.
This Spring, because of generous past support, the Foundation was able to fund an additional High Impact Grant and an additional Pilot Grant for a total of four (4) research grants. Additionally, the Foundation provided no-cost extensions to a portion of our current grantees to allow for extra time due to the continuing barriers to work that many have experienced because of the COVID-19 pandemic.
The Foundation successfully advocated for critical changes to ICD-10 codes for Sjögren's which took effect this year on October 1, 2021. The initiative, which began in 2017 and was done in partnership with the American College of Rheumatology, culminated in a successful effort to revise the existing ICD-10 code for Sjögren's that includes the critical change from “sicca” to “Sjögren.” Medical providers now have an expanded list of codes that provide a more accurate representation of the disease including codes that address systemic issues of Sjögren’s. This major achievement will greatly benefit patients as well as providers, investigators, researchers, and insurers, while addressing key complications of Sjögren's that were not included in the previous code.
The Foundation announced a significant investment to join the Accelerating Medicines Partnership Autoimmune and Immune-Mediated Diseases (AMP AIM) program that will investigate how cells of the immune system interact in tissue to drive inflammation and autoimmune disease. This is a landmark partnership with the Foundation for the National Institutes of Health (FNIH) and the National Institutes of Health and the largest research partnership where Sjögren's has been included. The Foundation will be a steering committee member alongside the NIH, other disease advocacy organizations, and pharmaceutical companies ensuring that Sjögren's will be front and center alongside other diseases.
This program will offer a new way to tackle the barriers that have prevented us from fully understanding Sjögren's and will advance our knowledge about the disease so we can better diagnose and treat Sjögren's patients, allow more informed selection of patients for clinical trials, and generate new targets for drug development.
Sjögren’s is the second most identifiable cause of autonomic neuropathy and has been associated with postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, or the malfunction of the autonomic nervous system. This is commonly underrecognized, underreported in medical literature, and often goes untreated. The Foundation has partnered with Dysautonomia International to fund a $150,000 research grant to study Sjögren’s & POTS. The research grant was awarded to Dr. Steve Vernino at University of Texas Southwestern Medical Center to study IVIG treatment for Sjögren's and POTS patients.
The Foundation continues to grow our relationship with the American College of Rheumatology (ACR). This included providing input for the ACR website educational information on Sjögren's and getting a letter to the editor titled “Sjögren’s Disease, Not Syndrome” published in Arthritis & Rheumatology, the official journal of ACR and a peer-reviewed publication for scientists and clinicians. The Foundation also had a significant presence at the ACR Annual Meeting which is the top opportunity to interact, educate, and raise awareness among the rheumatology community on what is happening in Sjögren's.
The Foundation had two (2) symposia on Sjögren's and the Pulmonary CPGs, hosted a Childhood Sjögren's Study Group, had multiple poster sessions and oral abstract presentations, and held the Foundation’s annual Fall Program focusing on expanding knowledge of Sjögren's through COVID-19 Dysautonomia. The Foundation also continues to publish Sjögren's Quarterly, a quality publication for healthcare professionals.
The Foundation is currently working with 15 companies in clinical trials for 21 systemic therapies that will treat the entire disease. Because the disease impacts each patient differently, we are working to have multiple treatments come to market so patients can find a therapy that works best for them. There are also companies working on new therapies for dry eye and dry mouth symptoms. Many of these companies are part of the Foundation’s Clinical Trial Consortium. The Foundation also works with companies to encourage patient participation and help with the clinical trial recruitment process.