The following is some of our work and achievements in 2019 and how we are making an impact in conquering the complexities of Sjögren’s.
Sjögren's Foundation Impact 2019
The Foundation continues to expand our efforts and is currently working with 11 pharmaceutical companies looking to develop potential therapies for Sjögren’s.
The Clinical Trial Consortium, the Foundation’s international initiative to increase the availability and accessibility of therapies to treat Sjögren’s, continues to evaluate key issues surrounding clinical trials while focusing on the development of better outcome measures in Sjögren’s and the discovery of diagnostic and prognostic biomarkers.
In 2019, the Foundation designed and launched the first ever online Sjögren’s Training and Education Platform (STEP) to be used to train clinical trial investigators.
The Sjögren’s Foundation launched an aggressive initiative to develop the very first Clinical Practice Guidelines for Sjögren’s which aim to improve the quality of care for Sjögren’s patients by developing guidelines for the assessment and management of a variety of disease manifestations.
Completed in 2015, Phase 1 of this initiative resulted in the development and publication of the first U.S. guidelines for the management and treatment of:
- Systemic Manifestations in Sjögren’s Patients
- Oral Management: Caries Prevention in Sjögren’s Patients
- Ocular Management in Sjögren’s Patients
Phase 2 of the Foundation Clinical Practice Guidelines are well underway and will significantly increase the guidance offered on the management and treatment of Sjögren’s. Some of the topics to be addressed in Phase 2 include guidelines for pulmonary complications, central nervous system involvement, peripheral nervous system involvement, lymphoma and vasculitis.
The Foundation is the premiere funding organization for Sjögren’s research and we are extremely proud of the leadership role that we have taken to move Sjögren's research forward. Over the past 10 years, the Foundation has invested nearly $4 million to fund a broad range of scientific initiatives, including the support of clinical and scientific studies through Foundation research grants.
This past fall, the Foundation announced a new funding opportunity for researchers, called the SSF High Impact Research Grant. This grant, offered at $75,000, was awarded for the first time this past Spring.
The Foundation also awarded a Foundation Pilot Research Award at $25,000.
In addition to our new 2019 grants, three additional grants were renewed for previous year awardees.
Every April for the past 19 years and in various cities around the country, the Foundation hosts the National Patient Conference, its premiere two-day educational conference for patients and their family. In 2019, over 550 people attended in the Boston, MA area. This was the largest attendee turnout ever for a NPC.
The Foundation also attempts to hold one-day regional conferences around the country and in November 2019, 175 people attended a one-day patient conference in Cleveland, OH.
The Foundation supports more than 65 local support groups in various cities throughout the United States. These groups connect patients together while also providing vital sharing of information about living with Sjögren’s
The Foundation publishes Conquering Sjögren’s, our patient newsletter that is sent to more than 10,000 people. The Foundation also has developed fact sheets, brochures and other educational resources.
In 2019, the Foundation created and launched a new web series on YouTube called Exploring Sjögren’s. This documentary style talk show discusses the various complications of Sjögren's while also sharing the work being done by the Foundation.
The Foundation website - www.sjogrens.org - remains the top source for relevant and valuable Sjögren’s information for patients, their families and healthcare providers and was viewed by more than 1.2 million unique visitors in 2019. In 2020, the Foundation overhauled the website to help improve the patient and visitor experience and to provide a welcoming, engaging, easy to use and mobile-friendly site.
In 2017, the Foundation released the results of our “Living with Sjögren’s” patient survey conducted in partnership with Harris Poll and with nearly 3,000 responses to help us better tell the story of the Sjögren’s patient, their quality of life and the burden of their illness.
In 2018, the Foundation was excited to announce that we surpassed our 5 year breakthrough goal: To Shorten the time to diagnose Sjögren’s by 50% in 5 years and it now currently takes 2.8 years, down from 6 years, to receive a proper diagnosis for Sjögren’s.