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Related Experiment Video

Updated: Feb 23, 2026

In Vivo Functional Study of Disease-associated Rare Human Variants Using Drosophila
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Rare disease registries: a call to action.

Paul Lacaze1, Nicole Millis2, Megan Fookes2

  • 1Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Internal Medicine Journal
|September 12, 2017
PubMed
Summary

Accurate clinical data registries are vital for rare diseases (RD). Establishing an Australian RD Registry Alliance will improve data sharing, research, and patient care for over 1.4 million Australians with RD.

Keywords:
clinical registriesgeneticsrare diseaseregistries

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Area of Science:

  • Health Services Research
  • Clinical Informatics
  • Rare Diseases

Background:

  • Clinical data registries are crucial for patient support, clinical trials, and improving healthcare quality, particularly for rare diseases (RD) with variable outcomes.
  • Australia faces challenges in establishing and maintaining effective RD registries due to financial, operational, and governance issues.

Purpose of the Study:

  • To advocate for prioritized RD data collection and an integrated Australian RD Registry strategy.
  • To propose the establishment of an Australian RD Registry Alliance to unify existing registries and develop national standards.

Main Methods:

  • A multidisciplinary team highlights the need for an 'umbrella' organization for Australian RD registries.
  • The proposed Alliance will focus on bringing registries together, establishing national standards, and securing sustainable funding.

Main Results:

  • The Alliance aims to maximize the utility of existing registries and support new ones.
  • Key functions include promoting interoperability, cohesion, and sustainable funding for RD registries.

Conclusions:

  • An Australian RD Registry Alliance is essential for translational research, addressing knowledge gaps in RD.
  • This initiative will improve the care and outcomes for the estimated 1.4 million Australians living with rare diseases.