In November, the Foundation attended the American College of Rheumatology (ACR) Convergence 2023 in San Diego, CA. This is the largest meeting for the rheumatology community with more than 13,000 attendees joining this year. This event is a premier opportunity for healthcare providers, pharmaceutical companies, patient advocacy groups, and researchers to meet and discuss important and timely topics in rheumatology, including prevention, diagnosis, and therapies for all rheumatic diseases. This was quite a year for Sjögren’s as there were 64 Sjögren’s-related scientific abstracts and three Sjögren’s-related scientific sessions.
Scientific Sessions on Sjögren’s
The oral sessions provided information on important topics and new insights into Sjögren’s research and medical management. Each session had a full audience of providers and researchers eager to learn and share information about Sjögren’s.
Session: De-"mystifying" Sjögren's Dryness: Molecular Interactions and Genetics Explained
The session focused on identifying Sjögren’s disease-associated cell types that explain the heterogeneity of Sjögren’s. The session was moderated by Darise Farris, PhD and Teresa Tarrant, MD. Christopher Lessard, PhD, led the session by providing an update on how genetic associations point to involvement of specific cell types in Sjögren’s glandular tissue and blood. Following this, Blake Warner, DDS, PhD, MPH, shared how genetic data from tissue can help identify disease pathophysiology in Sjögren’s. Lastly, Cintia S. de Paiva, MD, PhD, discussed gene pathways in the conjunctiva (mucous membrane) of Sjögren’s patients.
Session: Childhood Sjögren's
Moderated by Scott Lieberman, MD, PhD, and Akaluck “Ben” Thatayatikom, MD, this session focused on bringing awareness to childhood Sjögren’s as an underdiagnosed disorder with unique clinical manifestations, which makes childhood Sjögren’s difficult to diagnose. Sara Stern, MD, discussed the physical manifestations in children with Sjögren’s, which include less prominent dryness and greater frequency of inflammation in the parotid gland. She also provided information for how to manage salivary gland inflammation in childhood Sjögren’s. Cuoghi Edens, MD, offered her perspective as both a rheumatologist and adolescent/young adult women’s reproductive health specialist on the unique challenges facing young women with Sjögren’s as they mature.
Session: Oral Abstracts in Sjögren's Basic and Clinical Research
There were two Sjögren’s poster sessions for basic and clinical science that included a combined 36 abstracts. Non-Sjögren’s-specific sessions also contained a combined 28 more abstracts on Sjögren’s-related work. Of the submitted abstracts, the ACR chose six for oral presentations:
- Dose Dependent Modulation of a B Cell Protein Signature by Ianalumab in Patients with Sjögen’s Disease by Stephanie Finzel, MD, University Medical Center Freiburg
- Iscalimab (CFZ533) in Patients with Sjögren’s Disease: Week 24 Efficacy and Safety Results of a Randomized, Placebo-controlled, Phase 2b Dose-ranging Study by Benjamin A. Fisher, MD, MBBS, University of Birmingham
- Deep Learning Accurately Predicts Focus Score and Diagnosis of Primary Sjögren’s Syndrome Using Labial Salivary Gland Biopsies by Vincent Bouget, MSc, Scientia Lab
- Dazodalibep, a CD40L Antagonist, in Subjects with Sjögren’s Having Moderate-to-Severe Systemic Disease Activity: Full Crossover Results from a Phase 2, Randomized, Double-Blind, Placebo-Controlled, Proof of Concept Study by Eugene St. Clair, MD, Duke University Medical Center
- IgG-Fc-N-Sialylation and -Galactosylation in Primary Sjögren’s Syndrome (pSS) and its Potential as Marker of Disease State and Activity by Helena Achten, MD, Ghent University
- CD40L Inhibition with Dazodalibep Rapidly Reduces Blood Biomarkers of T and B Cell Costimulation in Subjects with Sjögren’s Having High Disease Activity or High Symptom Burden by Tuyet-Hang Pham, MS Horizon Therapeutics plc
Session: Challenging Complications of the Nervous System in Sjögren’s
The final Sjögren’s oral session was Monday evening and discussed the nervous system manifestations in Sjögren’s and how to create a management strategy for Sjögren’s patients with neurological complications. This session was moderated by Sara McCoy, MD, PhD, and Thomas Grader-Beck, MD, PhD. Brent Goodman, MD, discussed orthostatic intolerance (the inability to remain upright without symptoms) and the increasing association of dysautonomia (disorder of autonomic nervous system) with Sjögren’s. He also gave insights into the evaluation of dysautonomia in these patients. Next, Arun Varadhachary, MD, PhD, gave a talk on the development of migraines in Sjögren’s and how the immune system may impact neurological manifestations. Lastly, Julius Birnbaum, MD, a doctor that specializes in both rheumatology and neurology, discussed practical management strategies for Sjögren’s patients presenting with neurological complications.
Overall, the Foundation was excited to see so many providers present on and learn about the systemic nature of Sjögren’s.
Foundation Luncheon
Every year, the Foundation hosts our annual ACR Convergence luncheon to discuss updates on Foundation news, research advancements, and partnerships with research-funding organizations and coalitions. More than 100 healthcare professionals, researchers, and industry partners attended this invite-only event.
This year’s theme was “Collaborations Moving Sjögren’s Forward,” which emphasized the amount of work that the Foundation and our research partners have been able to do through medical and scientific collaboration. This event was moderated by Kathy Hammitt, MA, VP of Medical and Scientific Affairs at the Sjögren’s Foundation. The luncheon began with important updates from the Foundation, including our new research grant policies and offerings and their availability through Proposal Central (an online hub for researchers to search for funding opportunities). Furthermore, it was announced that the Foundation's State of Sjögren’s professional virtual event— which will address the topic of the difficult-to-diagnose patient— will be accredited for continuing medical education (CME) this year.
NIH Leadership Scholars Program
The Foundation also recognized Sara McCoy, MD, PhD, for her selection to the NIH Leadership Scholars Program for her project titled “Sjögren’s Disease Salivary Gland Mesenchymal Stromal Cells: Defining the Transcriptional and Epigenetic Landscape Changes in Health and Disease” to further Sjögren’s research. You can read more about this in the news story here.
Foundation of the National Institutes of Health (FNIH) Biomarkers Consortium
As part of the scientific program, Darise Farris, PhD, provided updates on the FNIH Biomarkers Consortium, a longtime collaborator with the Sjögren’s Foundation. Over the past 16 years, the Biomarkers Consortium has provided tools that helped advance 14 therapeutics, nine clinical tools for drug development, five FDA guidance documents, one clinical safety biomarker, and the Biomarker Evidence Criteria and Framework Guidance. The Biomarkers Consortium has more than 50 publications with 800+ citations. They are working on determining diagnostic biomarkers of Sjögren’s disease to improve how patients are placed into subgroups for more effective disease management and advances in therapeutic development. The goals of this project are to help understand the heterogeneity of Sjögren’s and provide data to update classification criteria and improve patient identification. The project is planned for three years. The approval for funding and launch of this project is scheduled for mid-2024.
Sjögren's Team for Accelerating Medicines Partnership (STAMP) and Accelerating Medicines Partnership for Autoimmune and Immune-mediated Diseases (AMP®AIM)
Judith James, MD, PhD, and Caroline Shiboski, DDS, PhD, MPH, provided an update on the AMP®AIM and STAMP. The overarching goal of AMP®AIM and STAMP is to transform the model for developing new diagnostics and treatments by identifying and validating promising biological targets. STAMP has completed its planning and pilot phase and has started recruiting Sjögren’s patients for testing. The next phase is to scale up and begin standardized clinical research protocols across sites and tease out the molecular mechanisms behind Sjögren’s in hopes to better understand the disease to improve Sjögren’s diagnosis and treatment for all Sjögren’s patients. Once these data are collected and generated, they will be publicly accessible to scientists and medical professionals.
NEw Clinical Endpoints in primary Sjögren’s Syndrome: an Interventional Trial based on stratifYing patients (NECESSITY)
Gaétane Nocturne, MD, PhD, discussed the NECESSITY project. The goals of NECESSITY are to develop and assess clinical endpoints (or the outcome(s) by which clinical trials measure the effectiveness of the intervention) and to identify and evaluate biomarkers used to distinguish Sjögren’s patients. The clinical endpoint developed by the NECESSITY project is called the Sjögren’s Tool for Assessing Response (STAR). STAR was developed based on analysis of nine clinical trials using international experts and patients. Currently, STAR is undergoing external validation (testing of the original method on new sets of patients) in the NECESSITY trial and plans to be done with recruitment for this trial by January 2025. You can learn more about NECESSITY here.
Outcome Measures in Rheumatology (OMERACT) Sjögren’s Working Group
Dr. Sara McCoy presented an update on the OMERACT Sjögren’s Working Group. The goal of OMERACT is to develop core outcomes for clinical trials in Sjögren’s and provide guidelines for the development and validation of outcome instruments. Phase 1 of this effort was to assemble a working group for Sjögren’s and create domains which include health and disease aspects that are important for patients/healthcare providers/researchers for clinical trial outcomes. A scoping literature review was used to create a preliminary set of core domains. Once agreed upon, the domains will undergo a group consensus and a vote for the final core domain set. To learn more about the OMERACT Sjögren's Working Group, you can find information here.
Foundation's Outstanding Abstract Awards for ACR Convergence 2023
Our luncheon ended with Scott Lieberman, MD, PhD, announcing the Foundation’s Outstanding Abstract Awards for ACR Convergence 2023. Our Outstanding Abstract Award winner was Maxwell Parker from the University of Wisconsin School of Medicine and Public Health. We also had two honorable mention awards- Dr. José Miguel Sequí-Sabater and Dr. Andreas Goules. Please see our news story to learn more about the winning abstracts.
Poster Sessions
This year was the first year that the Foundation participated in the Patient Perspectives poster session at ACR Convergence. The Foundation collaborated with two patients, Susan Barajas and Lisa Rubenstein, to present their posters titled “Sjögren’s-Fatigue: Non-Therapeutic Lifestyle Adjustments to Help Manage my Most Problematic Symptom” and “My Four Pillars of Wellness: How Sleep, Diet, Exercise, and Stress Reduction Enable Me to Define my Life and Not Let Sjögren’s Define Me”, respectively. It was important to show providers and researchers what patients experience and how they manage their symptoms. To view the abstract for Lisa Rubenstein's Patient Perspectives poster, please visit here.
The Foundation presented a poster titled, “Neurological Complications in Sjögren’s: Occurrence and Impact on Quality of Life (QoL),” which was well-received by those in attendance. Additionally, Foundation staff collaborated on three posters related to patient-reported outcomes in Sjögren’s for clinical trials that were presented during the conference.
Above: Matt Makara, Sr. Director of Research and Scientific Affairs for the Foundation, discussing the Foundation's poster on Neurological complications in Sjögren's to Caroline Shiboski, DDS, MPH, PhD.
Foundation Booth and Professional Awareness
As in years past, the Foundation hosted and staffed a booth as part of the exhibit hall and enjoyed meeting the many healthcare professionals and researchers that stopped by to learn more about Sjögren’s and the Foundation. Foundation staff discussed key items with attendees, including the availability of both patient and professional resources, the development of clinical practice guidelines, the Foundation’s new grant mechanisms, and the upcoming State of Sjögren’s event taking place in January.
Additionally, Matt Makara, MPH, Sr. Director of Research and Scientific Affairs for the Foundation, participated in two ACR-led events to further promote how the Foundation can support professionals. First, in what have been branded as Lightning Talks, Matt provided a 5-minute run-through on an exhibit hall stage on the professional aspects of the Foundation’s Mission and specific ways for professionals to get involved and stay informed on Sjögren’s. This presentation included mention of Sjögren’s Quarterly, grant funding, the availability and ongoing development of new clinical practice guidelines, CME courses, clinical trial resources and training through the Sjögren’s Training and Education Platform, and, lastly, the State of Sjögren’s event. To further discuss grants, Matt participated in the “Meet the Funders” session, which took place on Tuesday, Nov. 14, where he discussed the Foundation’s new grant mechanisms and answered questions for interested investigators.
In addition to the above, Foundation staff had many meaningful and productive conversations with many individuals, industry partners, and fellow advocacy and education organizations, the results of which will help the Foundation continue to expand our professional networks and improve our offerings.
The Foundation looks forward to next year at ACR Convergence 2024, which will be held in Washington, DC!
In November, the Foundation attended the American College of Rheumatology (ACR) Convergence 2023 in San Diego, CA. This is the largest meeting for the rheumatology community with more than 13,000 attendees joining this year. This event is a premier opportunity for healthcare providers, pharmaceutical companies, patient advocacy groups, and researchers to meet and discuss important and timely topics in rheumatology, including prevention, diagnosis, and therapies for all rheumatic diseases. This was quite a year for Sjögren’s as there were 64 Sjögren’s-related scientific abstracts and three Sjögren’s-related scientific sessions.
Scientific Sessions on Sjögren’s
The oral sessions provided information on important topics and new insights into Sjögren’s research and medical management. Each session had a full audience of providers and researchers eager to learn and share information about Sjögren’s.
Session: De-"mystifying" Sjögren's Dryness: Molecular Interactions and Genetics Explained
The session focused on identifying Sjögren’s disease-associated cell types that explain the heterogeneity of Sjögren’s. The session was moderated by Darise Farris, PhD and Teresa Tarrant, MD. Christopher Lessard, PhD, led the session by providing an update on how genetic associations point to involvement of specific cell types in Sjögren’s glandular tissue and blood. Following this, Blake Warner, DDS, PhD, MPH, shared how genetic data from tissue can help identify disease pathophysiology in Sjögren’s. Lastly, Cintia S. de Paiva, MD, PhD, discussed gene pathways in the conjunctiva (mucous membrane) of Sjögren’s patients.
Session: Childhood Sjögren's
Moderated by Scott Lieberman, MD, PhD, and Akaluck “Ben” Thatayatikom, MD, this session focused on bringing awareness to childhood Sjögren’s as an underdiagnosed disorder with unique clinical manifestations, which makes childhood Sjögren’s difficult to diagnose. Sara Stern, MD, discussed the physical manifestations in children with Sjögren’s, which include less prominent dryness and greater frequency of inflammation in the parotid gland. She also provided information for how to manage salivary gland inflammation in childhood Sjögren’s. Cuoghi Edens, MD, offered her perspective as both a rheumatologist and adolescent/young adult women’s reproductive health specialist on the unique challenges facing young women with Sjögren’s as they mature.
Session: Oral Abstracts in Sjögren's Basic and Clinical Research
There were two Sjögren’s poster sessions for basic and clinical science that included a combined 36 abstracts. Non-Sjögren’s-specific sessions also contained a combined 28 more abstracts on Sjögren’s-related work. Of the submitted abstracts, the ACR chose six for oral presentations:
Session: Challenging Complications of the Nervous System in Sjögren’s
The final Sjögren’s oral session was Monday evening and discussed the nervous system manifestations in Sjögren’s and how to create a management strategy for Sjögren’s patients with neurological complications. This session was moderated by Sara McCoy, MD, PhD, and Thomas Grader-Beck, MD, PhD. Brent Goodman, MD, discussed orthostatic intolerance (the inability to remain upright without symptoms) and the increasing association of dysautonomia (disorder of autonomic nervous system) with Sjögren’s. He also gave insights into the evaluation of dysautonomia in these patients. Next, Arun Varadhachary, MD, PhD, gave a talk on the development of migraines in Sjögren’s and how the immune system may impact neurological manifestations. Lastly, Julius Birnbaum, MD, a doctor that specializes in both rheumatology and neurology, discussed practical management strategies for Sjögren’s patients presenting with neurological complications.
Overall, the Foundation was excited to see so many providers present on and learn about the systemic nature of Sjögren’s.
Foundation Luncheon
Every year, the Foundation hosts our annual ACR Convergence luncheon to discuss updates on Foundation news, research advancements, and partnerships with research-funding organizations and coalitions. More than 100 healthcare professionals, researchers, and industry partners attended this invite-only event.
This year’s theme was “Collaborations Moving Sjögren’s Forward,” which emphasized the amount of work that the Foundation and our research partners have been able to do through medical and scientific collaboration. This event was moderated by Kathy Hammitt, MA, VP of Medical and Scientific Affairs at the Sjögren’s Foundation. The luncheon began with important updates from the Foundation, including our new research grant policies and offerings and their availability through Proposal Central (an online hub for researchers to search for funding opportunities). Furthermore, it was announced that the Foundation's State of Sjögren’s professional virtual event— which will address the topic of the difficult-to-diagnose patient— will be accredited for continuing medical education (CME) this year.
NIH Leadership Scholars Program
The Foundation also recognized Sara McCoy, MD, PhD, for her selection to the NIH Leadership Scholars Program for her project titled “Sjögren’s Disease Salivary Gland Mesenchymal Stromal Cells: Defining the Transcriptional and Epigenetic Landscape Changes in Health and Disease” to further Sjögren’s research. You can read more about this in the news story here.
Foundation of the National Institutes of Health (FNIH) Biomarkers Consortium
As part of the scientific program, Darise Farris, PhD, provided updates on the FNIH Biomarkers Consortium, a longtime collaborator with the Sjögren’s Foundation. Over the past 16 years, the Biomarkers Consortium has provided tools that helped advance 14 therapeutics, nine clinical tools for drug development, five FDA guidance documents, one clinical safety biomarker, and the Biomarker Evidence Criteria and Framework Guidance. The Biomarkers Consortium has more than 50 publications with 800+ citations. They are working on determining diagnostic biomarkers of Sjögren’s disease to improve how patients are placed into subgroups for more effective disease management and advances in therapeutic development. The goals of this project are to help understand the heterogeneity of Sjögren’s and provide data to update classification criteria and improve patient identification. The project is planned for three years. The approval for funding and launch of this project is scheduled for mid-2024.
Sjögren's Team for Accelerating Medicines Partnership (STAMP) and Accelerating Medicines Partnership for Autoimmune and Immune-mediated Diseases (AMP®AIM)
Judith James, MD, PhD, and Caroline Shiboski, DDS, PhD, MPH, provided an update on the AMP®AIM and STAMP. The overarching goal of AMP®AIM and STAMP is to transform the model for developing new diagnostics and treatments by identifying and validating promising biological targets. STAMP has completed its planning and pilot phase and has started recruiting Sjögren’s patients for testing. The next phase is to scale up and begin standardized clinical research protocols across sites and tease out the molecular mechanisms behind Sjögren’s in hopes to better understand the disease to improve Sjögren’s diagnosis and treatment for all Sjögren’s patients. Once these data are collected and generated, they will be publicly accessible to scientists and medical professionals.
NEw Clinical Endpoints in primary Sjögren’s Syndrome: an Interventional Trial based on stratifYing patients (NECESSITY)
Gaétane Nocturne, MD, PhD, discussed the NECESSITY project. The goals of NECESSITY are to develop and assess clinical endpoints (or the outcome(s) by which clinical trials measure the effectiveness of the intervention) and to identify and evaluate biomarkers used to distinguish Sjögren’s patients. The clinical endpoint developed by the NECESSITY project is called the Sjögren’s Tool for Assessing Response (STAR). STAR was developed based on analysis of nine clinical trials using international experts and patients. Currently, STAR is undergoing external validation (testing of the original method on new sets of patients) in the NECESSITY trial and plans to be done with recruitment for this trial by January 2025. You can learn more about NECESSITY here.
Outcome Measures in Rheumatology (OMERACT) Sjögren’s Working Group
Dr. Sara McCoy presented an update on the OMERACT Sjögren’s Working Group. The goal of OMERACT is to develop core outcomes for clinical trials in Sjögren’s and provide guidelines for the development and validation of outcome instruments. Phase 1 of this effort was to assemble a working group for Sjögren’s and create domains which include health and disease aspects that are important for patients/healthcare providers/researchers for clinical trial outcomes. A scoping literature review was used to create a preliminary set of core domains. Once agreed upon, the domains will undergo a group consensus and a vote for the final core domain set. To learn more about the OMERACT Sjögren's Working Group, you can find information here.
Foundation's Outstanding Abstract Awards for ACR Convergence 2023
Our luncheon ended with Scott Lieberman, MD, PhD, announcing the Foundation’s Outstanding Abstract Awards for ACR Convergence 2023. Our Outstanding Abstract Award winner was Maxwell Parker from the University of Wisconsin School of Medicine and Public Health. We also had two honorable mention awards- Dr. José Miguel Sequí-Sabater and Dr. Andreas Goules. Please see our news story to learn more about the winning abstracts.
Poster Sessions
This year was the first year that the Foundation participated in the Patient Perspectives poster session at ACR Convergence. The Foundation collaborated with two patients, Susan Barajas and Lisa Rubenstein, to present their posters titled “Sjögren’s-Fatigue: Non-Therapeutic Lifestyle Adjustments to Help Manage my Most Problematic Symptom” and “My Four Pillars of Wellness: How Sleep, Diet, Exercise, and Stress Reduction Enable Me to Define my Life and Not Let Sjögren’s Define Me”, respectively. It was important to show providers and researchers what patients experience and how they manage their symptoms. To view the abstract for Lisa Rubenstein's Patient Perspectives poster, please visit here.
Susan Barajas presenting her Patient Perspectives poster at ACR Convergence 2023
"It’s critical for doctors and medical personnel to understand the patient’s perspective when developing a treatment plan. Fatigue is one of the most challenging symptoms to treat and occurs with many rheumatic diseases, not just Sjögren’s. Through my Patient Poster, I was able to share the significant impact fatigue has on my everyday life and the non-therapeutic ways I use to lessen its impact. I’m hopeful that my perspective can help ACR attendees better understand the impact of fatigue on patients, and perhaps suggest some of my techniques for fatigue management, thus helping improve patients’ quality of life".- Susan Barajas, Chair, Sjögren’s Foundation Board of Directors
Abstract for Susan Barajas' Patient Perspectives poster at ACR Convergence 2023The Foundation presented a poster titled, “Neurological Complications in Sjögren’s: Occurrence and Impact on Quality of Life (QoL),” which was well-received by those in attendance. Additionally, Foundation staff collaborated on three posters related to patient-reported outcomes in Sjögren’s for clinical trials that were presented during the conference.
Above: Matt Makara, Sr. Director of Research and Scientific Affairs for the Foundation, discussing the Foundation's poster on Neurological complications in Sjögren's to Caroline Shiboski, DDS, MPH, PhD.
Foundation Booth and Professional Awareness
As in years past, the Foundation hosted and staffed a booth as part of the exhibit hall and enjoyed meeting the many healthcare professionals and researchers that stopped by to learn more about Sjögren’s and the Foundation. Foundation staff discussed key items with attendees, including the availability of both patient and professional resources, the development of clinical practice guidelines, the Foundation’s new grant mechanisms, and the upcoming State of Sjögren’s event taking place in January.
Additionally, Matt Makara, MPH, Sr. Director of Research and Scientific Affairs for the Foundation, participated in two ACR-led events to further promote how the Foundation can support professionals. First, in what have been branded as Lightning Talks, Matt provided a 5-minute run-through on an exhibit hall stage on the professional aspects of the Foundation’s Mission and specific ways for professionals to get involved and stay informed on Sjögren’s. This presentation included mention of Sjögren’s Quarterly, grant funding, the availability and ongoing development of new clinical practice guidelines, CME courses, clinical trial resources and training through the Sjögren’s Training and Education Platform, and, lastly, the State of Sjögren’s event. To further discuss grants, Matt participated in the “Meet the Funders” session, which took place on Tuesday, Nov. 14, where he discussed the Foundation’s new grant mechanisms and answered questions for interested investigators.
In addition to the above, Foundation staff had many meaningful and productive conversations with many individuals, industry partners, and fellow advocacy and education organizations, the results of which will help the Foundation continue to expand our professional networks and improve our offerings.
The Foundation looks forward to next year at ACR Convergence 2024, which will be held in Washington, DC!