AUSTRALASIAN DERMATOLOGY REGISTRY NEWSLETTER MAY 2024

Welcome to the first newsletter of the Australasian Dermatology Registry (ADR), which ‘went live’ in September 2023. It is with considerable pride that we present our first update since the official launch. There has been an enormous amount of work behind the scenes since the decision was made to take the next step in the natural evolution of the Australasian Psoriasis Registry (APR).

The initial APR was established in 2009 and over its journey collated data on over 2,500 individuals with psoriasis, from over 100 contributing sites. Several years ago, the decision was made to join forces with Biogrid Australia, a not-for-profit service provider established and owned by the health and medical research community, which develops and provides national data sharing platforms to support health and biomedical research. However, over time it became apparent that the original architecture was dating, data entry was time and resource consuming, reporting was manual and laborious, navigation was difficult, and data linkage was not possible.

There was also a fledgling demand to develop registries in other dermatological conditions.

After internal discussion, a decision was made to develop a new registry that would enable data capture across multiple disease states, utilising common modules that were relevant to all registry participants to ensure standardised data collection, whilst developing disease specific modules capturing data relevant to the condition in question.

After a tender process, Biogrid were engaged to take on the role of developing the new registry from scratch. The first four conditions to be included are psoriasis, atopic dermatitis, hidradenitis suppurativa and vitiligo. Julie Armstong was employed as Clinical Registry Co-ordinator and has worked assiduously with Biogrid to bring our vision to fruition.

She has been joined in the ADR office by Chelsea Lehman, Clinical Registry Officer, as the registry rolls out. The registry is overseen by a Steering Committee which includes dermatologists from around Australia with both clinical and research expertise, a rheumatologist bringing experience from the OPAL registry, and Australasian College of Dermatologists representation. Each condition has its own Scientific Advisory Committee (SAC) with national representation from those with a specific interest, as well as a nurse working in the area. They will soon be joined by a consumer/patient representative. Each SAC developed the disease specific minimum dataset to reflect data currently collected as part of routine clinical practice, data collected by international registries, data reported in clinical trials and other clinical research studies, and gaps in the literature that need to be addressed. The disease-specific minimum data set was determined to provide enough evidence to monitor and evaluate quality of care and provide data for research, without being a large burden to patients and clinics in data collection.

Ethics approval for the ADR has been granted by Melbourne Health Human Research Ethics Committee. With national mutual recognition, new sites can be added by the ADR team, with minimal work on the part of the site. Institutions need only seek research governance approval without the need for individual sites applying for ethics committee protocol approval.

The newsletter provides details on the number of sites and participants already engaged in the registry, along with a demonstration of the ease of recruitment and use for participants, and the limited data entry requirements for sites.

We extend our thanks to all who have contributed so far, including the team at Skin Health Institute, Biogrid, our sponsors who have enabled the build as well as ongoing maintenance, the participating sites, the various committees, and of course our patients.

We invite you to take a moment to enjoy the early days of the new ADR.