The redeveloped Australasian Dermatology Registry is well and truly open for business.
The redevelopment of the Australasian Psoriasis Registry to include other common skin conditions is allowing for the monitoring of the management, treatment, outcomes and quality of life in a broader group of patients.
The Australasian Psoriasis Registry was first established in 2009 and proved to be a valuable source of information for researching and treating psoriasis. However, the technology the registry is built on has since become outdated, making data entry time consuming.
“The redevelopment of the registry to become the Australasian Dermatology Registry enabled expansion of the registry to include additional skin conditions whilst reducing the burden of data entry and increasing registry functionality in providing real-time data to its users,” the authors of a recent report detailing the development of the ADR wrote. The brief report was published in the Australasian Journal of Dermatology.
The ADR currently collects data on patients with psoriasis, atopic dermatitis, hidradenitis suppurativa and vitiligo. The latter three conditions were selected based on the frequency of the condition and initial interests from contributing dermatologists, but the registriy will look to include other skin conditions based on interest and funding.
All patients who attend participating clinics are eligible for the ADR, provided they can speak English or have access to a translator (as the consent forms and questionnaires are currently only available in English). Consent is obtained electronically, before patients complete the necessary questionnaires on their computer, tablet or smartphones via QR code or URL.
The ADR has been designed in a modular fashion, with both shared (e.g., demographic and lifestyle questions) and disease-specific modules (e.g., the Hidradenitis Suppurativa Quality of Life tool) used to minimise patient burden while allowing for potential expansions and updates in future. The initial baseline questionnaire takes approximately 10-15 minutes to complete, with subsequent follow-up questionnaires taking approximately five minutes.
Eighty participating sites throughout Australia have already enrolled almost 1200 patients between them following the ADR’s redevelopment and launch in September 2023. There are plans to start recruitment in New Zealand in early 2026. Dermatologists who choose to contribute data and review ADR outputs can claim category 3 CPD points.
Collected data are used in reports and research projects, with the ADR’s website listing both current and upcoming research projects.
“De-identified registry data are available to any sites that contribute data to the registry with the appropriate human ethics committee approval. All data requests will be reviewed by the relevant scientific advisory committee for scientific merit, methodology and to ensure there is no duplication of studies prior to data release,” the authors wrote.
“Providing dermatologists with accurate up-to-date real-world data on risk factors for common skin conditions, current and emerging treatments and the impact on patients’ quality of life will help them make informed decisions for patient management… in addition to linking patients with researchers for additional research projects and clinical trials.”
Pharmaceutical companies Abbvie, Amgen, Boehringer Ingelheim, Bristol Myer Squibb, Janssen, Leo Pharma, Lilly, Novatis, Pfizer and SunPharma funded the development of the new registry, while the F&E Bauer Foundation are providing ongoing financial support.
Further information about the ADR is available online.
