Prof Johannes Nossent

Since receiving the Arthritis Australia Project Grant in 2017 we have undertaken a number of research activities. Firstly, we utilised the Western Australian Rheumatic Disease Epidemiological Registry (WARDER) to produce measures of hospitalisation rates, and mortality rates for patients with SLE over the last 35 and 20 years, respectively. These findings have been presented at national and international scientific meetings and the manuscripts for these projects are currently being written. Secondly, we made inroads to describe the clinical characteristics and disease course of SLE patients in WA in more detail. This was achieved through a collaboration between the Departments of Rheumatology, Immunology, Pathology and Renal Medicine at Sir Charles Gairdner Hospital, where we undertook a retrospective review of all patients undergoing a renal biopsy in Perth, Western Australia. This collaboration resulted in 4 abstracts, 4 poster presentations, 1 manuscript undergoing peer-review and 1 more to be finalised amongst the author group. These research outputs detail the differences in health outcomes across ethnic groups as well as looking at the differences in histopathology and clinical outcomes between Indigenous and non-Indigenous Australians. While the bulk of the research has been completed data collection will enable us to do an additional project that will look at the disease course of a sub-set of patients with multiple renal biopsies. Finally, we aimed to increase the number of participants in the Perth Lupus Registry and Biobank (PLRB). So far we were able to increase patient recruitment to over 100 patients, up 100% year-on-year, and the project is closing in on the target of 250 participants by the year end of 2018. Progress with the PLRB includes partnering with Infobite™ a mobile application system that securely stores data on Amazon Web Services servers to collect health-related quality of life information via a participant’s mobile or email. The partnership to collect data with Infobite™ aims to ease time pressures of clinicians to collect data during their consultation, and streamline data collection by reducing the need for paper questionnaires and face-to-face interviews. The PLRB has been running since 2015 and as a result we have up to 3 years of data collection for some participants. We are still on track to produce research outputs, including a manuscript, describing an inception cohort from July 2019. This grant was not about generating a single answer to one specific research question, but rather, it enabled us to establish or contribute to the development of a number of research databases, i.e. Lupus Nephritis Database, Perth Lupus Registry and Biobank and the Western Australian Rheumatic Disease Epidemiological Registry (WARDER). From these databases we have produced 8 abstracts, 6 poster presentations, 1 oral presentation, 1 manuscripts under review and 1 manuscript on lupus mortality rates in WA is currently being drafted for submission. While our research is descriptive and epidemiological in nature we were able to describe for the first time the way in which Western Australians with SLE experience lupus nephritis from both an ethnographic and histopathological perspective. Furthermore, we were able to detail the mortality rates and causes of death from 1980 to 2015, of which, a more refined analysis on the period from 1995 to 2015 was presented in Europe and will be published on later this year. This research is important to describe the Western Australian context for patients with SLE. SLE is relatively rare and the ‘noise’ created by cancer(s), cardiovascular disease, diabetes, etc. can often drown out the awareness in the community about other conditions. By producing this research we are actively raising awareness about the condition within the health and medical research community, teaching hospitals, consumer advocacy groups (LupusWA) and the Arthritis Foundation of Western Australia), patients and the wider community.