Sjögren’s Foundation Realizes Goal of Cutting Time to Diagnosis by Half

Ana Pena, PhD avatar

by Ana Pena, PhD |

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The average time for a patient to be diagnosed with Sjögren’s syndrome has been reduced from six to less than three years, meeting the “5-Year Breakthrough Goal” established by the Sjögren’s Syndrome Foundation in January 2012.

Patients should benefit greatly from this milestone, as early diagnosis and treatment can prevent serious complications and improve their quality of life. An incorrect diagnosis —or no diagnosis at all — not only jeopardizes patients’ physical health, but can create devastating emotional consequences.

“… the foundation is honored and excited to announce that we have not only reached our goal but have surpassed it, by reporting that the average diagnosis time is currently 2.8 years!” the foundation announced on its website.

However, Sjögren’s diagnosis is challenging. The symptoms can overlap with other diseases and might look unrelated, leading patients to consider them as separate conditions.

In the beginning of 2012, the Sjögren’s Foundation vowed to reach a breakthrough goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years!” At that time, it took an average of six years for patients to be correctly diagnosed with Sjögren’s from the time they started seeking a diagnosis.

“We cannot sit on the sidelines and let those patients suffer any longer,” Steven Taylor, CEO of the foundation, said at the time.

Since then, the organization started a series of initiatives to raise awareness and educate about Sjögren’s.

The plan of action focused on three fronts: increasing public awareness, promoting the involvement of friends and partners, and educating and raising awareness among healthcare professionals.

“We believed that our goal would transform the disease because as physicians start seeing more Sjögren’s patients in their practices, they would need to become more knowledgeable of the disease’s different manifestations and the treatment options available,” said the foundation.

The program has benefited from the help of hundreds of volunteers, Awareness Ambassadors, who have helped distribute Sjögren’s educational materials in their communities.

Other initiatives include the blog Conquering Sjögren’s, together with awareness and fund-raising events like Walk for Sjögren’s, Sip for Sjögren’s and the Team Sjögren’s Running Program.

Along with healthcare practitioners, the foundation also has been developing Clinical Practice Guidelines in the areas of rheumatology, oral medicine, and eye care, offering recommendations to help physicians manage and treat their Sjögren’s patients.

To encourage the development of new therapies and clinical trials, the foundation also built a Clinical Trials Consortium that is actively working alongside companies and the regulatory agencies U.S. Food and Drug Administration (FDA) and European Medicine Agency (EMA).

The foundation also continued to partner with several other autoimmune disease organizations to advocate and ensure that Sjögren’s patients are represented in the healthcare debate.

“It will take an army, but by talking with one person at a time, one community at a time, one physician at a time and one company at a time – we will reach our goal and transform the future of Sjögren’s!” Taylor wrote on the website.

Now that the time to diagnosis has dropped to less than three years, the Sjögren’s Foundation will continue efforts to improve that mark, educating the medical community and encouraging people to be their own health advocates.

“It is still our hope to have Sjögren’s at the top of physician’s minds when they hear a patient complaining of dry mouth, dry eye, fatigue, or joint pain because no patient should have to suffer from the lack of a physician’s awareness and education,” the foundation stated.