Informing a national rare disease registry strategy in Australia: a mixed methods study.

Background: Rare disease registries (RDRs) facilitate monitoring of rare diseases by pooling small datasets to increase clinical and epidemiological knowledge of rare diseases and promote patient centred best practice. The aim of this study was to understand the current state of RDRs in Australia, data captured, impact on patient outcomes, funding models, and barriers and enablers regarding their establishment and maintenance.

Methods: An exploratory sequential mixed methods study design was adopted.

Current state of rare disease registries and databases in Australia: a scoping review.

Background: Rare diseases (RDs) affect approximately 8% of all people or > 400 million people globally. The Australian Government's National Strategic Action Plan for Rare Diseases has identified the need for a national, coordinated, and systematic approach to the collection and use of RD data, including registries. Rare disease registries (RDRs) are established for epidemiological, quality improvement and research purposes, and they are critical infrastructure for clinical trials.

Factors influencing the attitudes of young Sri Lankan-Australians towards seeking mental healthcare: a national online survey.

Background: Sri Lankans, as part of the South Asian diaspora, comprise one of the largest migrant groups in Australia. Although few data are available, South Asian migrants appear to experience higher rates of mental health problems, but seek help at lower rates than other migrant groups. Understanding factors that underpin mental health care seeking is necessary to inform mental health promotion strategies, including access to care.