Clinical Trials

Autoimmunity and health: quantifying diagnosis

Type of Study/Intervention

Non-interventional

Recruitment Status

Recruiting

Form of MS

Relapsing MS, Relapsing remitting MS, Secondary progressive MS, Primary progressive MS, Clinically isolated syndrome, Optic neuritis, Neuromyelitis Optica

Brief summary

Autoimmune diseases (such as rheumatoid arthritis, lupus, multiple sclerosis and Crohn’s disease) are a very broad category of diseases, and many autoimmune conditions share features like fatigue or muscle pain. Classification has varied over time, and this has changed diagnostic procedures and reporting. In addition to diagnosis, misdiagnosis is anecdotally referred to, with certain chronic conditions ignored at first.

Our research usually focuses on the genomic aspect of autoimmune disease, but there is more to the picture. A patient’s personal diagnostic journey is just as important as the medical treatment and diagnosis they receive. As part of work on understanding autoimmunity, our team is trying to capture a realistic picture of these illnesses through the lens of the patients.

In order to identify ways to expedite and personalise treatment, the understanding of current therapies, treatments, diagnoses and self-medication are necessary. We aim to collect demographic and longitudinal information through a confidential online survey, following informed consent from participants. We are looking for individuals diagnosed with autoimmune disease(s), other chronic related illnesses, as well as healthy controls as a comparison point in order to improve the diagnostic journeys of patients that already suffer from highly morbid conditions. We will not be collecting any health or genomic records at this time.

Inclusion criteria

– Currently residing in Australia
– Adults (18+ years old)
– Any current chronic illness
– Individuals with autoimmune disease
– Currently healthy or believed to be healthy

Exclusion criteria

– Patients with a history of a psychological illness or condition such as to interfere with the patient’s ability to understand the requirements of the study.
– Participants not in Australia.

Anticipated start date

July 2021

Recruitment contacts

Chief Investigator: Dr Sara Ballouz
Email Address: s.ballouz@garvan.org.au
Telephone number: +61 2 9355 5722

Further details

Information on the project can be found here.

The survey can be found here.

Region

NSW, ACT, SA, VIC, QLD, WA, TAS, NT

Ethics approval

Yes

HREC: 2020/ETH02793

Last updated

04/08/2021

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