Monash Sjögren Registry: Advancing Research, Enhancing Care

The Monash Sjögren Registry is an initiative dedicated to improving the understanding, diagnosis, and management of Sjögren disease—a chronic autoimmune condition that is often under-recognised and misdiagnosed. This registry, established by Monash Health and Monash University, aims to collect quality data to support long-term research into Sjogren disease, in order to enhance patient care, and drive the development of more effective treatments.

About Sjögren Disease

Sjögren disease primarily affects the exocrine glands, most notably affects the lacrimal and salivary glands, leading to dry eyes and dry mouth. However its impact extends far beyond these symptoms. The condition can also affect internal organs, leading to a diverse range of health complications. Due to its complex nature, many patients struggle for years before receiving a correct diagnosis and appropriate care.

Why a Registry?

The Monash Sjögren Registry serves as a comprehensive database that enables clinicians and researchers to:

  • Gain deeper insights into the disease’s full spectrum
  • Improve diagnostic practices for earlier and more accurate identification
  • Facilitate the development of targeted therapies and treatment options

The registry is led by Professor Alberta Hoi, a rheumatologist and Chief Investigator of the Monash Sjögren Registry. She also serves as the Chair of the Australian Lupus Registry & Biobank (ALRB), bringing extensive expertise in longitudinal cohort studies that track patient outcomes over time. This experience strengthens the Monash Sjögren Registry’s ability to drive meaningful research and improve care for people with autoimmune diseases.

To expand the impact of this research, Prof Hoi is partnering with Professor Maureen Rischmueller, a renowned expert in Sjögren disease based at Queen Elizabeth Hospital, South Australia. Together, they are working towards the development of a national Sjögren disease database, ensuring that Australian research contributes to global advancements in understanding and treating this condition.

Group Leader

How to Participate

Individuals who have been identified as having, or potentially having, Sjögren disease are invited to contribute to this vital research. Participation involves:

  1. Contacting our team to express interest and receive further information.
  2. Providing medical history and symptom details, either online or through a visit to Monash Health.
  3. Annual follow-ups to track health changes, with optional blood sample collection at Monash Medical Centre.
  4. Completing questionnaires to help researchers understand patient experiences.

Participation is voluntary, and all data is kept strictly confidential, used solely for research purposes.

Join Us in Advancing Sjögren Disease Research

By taking part in the Monash Sjögren Registry, you will be contributing to ground-breaking research that has the potential to improve patient outcomes and future treatments. If you would like to learn more or register your interest, please contact our team at:

Together, we can make a difference in the lives of those affected by Sjögren disease.