The UCSF School of Dentistry has received a five-year $11.9 million award to establish an international registry network to study Sjögren’s (SHOW grens) syndrome, an immulogic disorder.
The award will support creation of the Sjögren’s International Clinical Collaborative Alliance. Funding is from the National Institute of Dental and Craniofacial Research, National Eye Institute, and the NIH Office for Research on Women’s Health.
Sjögren’s Syndrome, known as SS, is a chronic disease in which the immune system prominently attacks the salivary and lacrimal (tear) glands. The hallmark symptoms are dry eyes and dry mouth, but it is a progressive systemic disease, potentially affecting many organs.
SS affects as many as four million Americans, approximately one in every 100 members of the adult population. Nine out of ten affected by SS are women, according to Troy Daniels, DDS, one of two principal investigators.
“The new international Alliance will benefit significant numbers of Americans and others around the world who suffer from the chronic symptoms and complications of the disease,” he added. Daniels is a UCSF professor of dentistry.
Four clinics outside the US will participate in the registry. They are University of Buenos Aires, Peking Union Medical College, Copenhagen County University Hospital, and Kanazawa Medical University, Japan.
Patients with primary SS often experience progressive damage to the glands, leading to oral or ocular infections or other complications, in addition to the development of autoantibodies in their blood stream. The immune mechanisms causing SS are similar to those causing rheumatoid arthritis and systemic lupus. In fact, a secondary form of SS can develop in some patients who already have those, or related diseases. In patients with primary SS, other organ systems, such as the liver, kidneys or lungs, can become involved and, on rare occasions, may progress to malignant lymphoma.
The new Alliance will establish standardized objective diagnostic criteria for SS, collect clinical data and biospecimens from patients and their families and create a clinical data and tissue bank to facilitate future research projects on the cause, mechanisms, prevention, and treatment of this disease.
The two principal investigators on the project, Daniels and Professor John Greenspan, DDS, PhD, have collaborated on various studies for many years. The creation of the Alliance builds on more than 30 years of work in the UCSF Sjogren’s Syndrome Clinic, co-founded by Daniels in 1972, and on over 20 years of specimen-banking work by Greenspan and his team, who established the ongoing UCSF AIDS Specimen Bank in 1982.
Patients will be admitted to the Alliance registry at five participating clinical centers worldwide, where data and specimens will be collected and transmitted to the project coordinating center at UCSF. “With this approach, groups of scientists across the world will end up using the same ways of approaching this surprisingly common disease,” Greenspan said.
“The patient benefits from this internationl effort will come from having improved diagnostic criteria to better identify this disease, and from research projects that will be supported by the availability of this clinical data and biospecimens,” Greenspan said.
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