Rare Voices Australia (RVA) Partner, Childhood Dementia Initiative (CDI), recently launched the Childhood Dementia Knowledgebase (the Knowledgebase)—a growing collection of rich data about the 100+ conditions that cause childhood dementia. The Knowledgebase is a relational database providing key information, including incidence, prevalence, life expectancy, age of onset and diagnosis, genetic cause, signs and symptoms and more! Clinicians and researchers can interrogate the Knowledgebase for their research and plan new and innovative research projects. In parallel to the development of the Knowledgebase, CDI brought together health and medical researchers from around the world to drive research and increase opportunities for collaboration through their Childhood Dementia Research Alliance (the Alliance). The Alliance has helped shape the Knowledgebase and, as prime users of this resource, will continue to contribute to its future expansion and improvements.
Limited data is a common feature of rare diseases, often resulting in high uncertainly, which impacts every part of people’s lives. The Knowledgebase is driving the collection of much needed data relating to a broad range of life-limiting rare diseases—data that can support the development of new knowledge and treatments in an area of high unmet need. This initiative contributes to the implementation of key areas in the National Strategic Action Plan for Rare Diseases (the Action Plan). It directly addresses Priority 3.1 in the Research and Data Pillar, ‘Enable coordinated and collaborative data collection to facilitate the monitoring and cumulative knowledge of rare diseases, informing care management, research and health system planning’. The high quality, comprehensive collection and effective use of rare disease data is also one of the critical enablers of the Action Plan.
RVA is excited in anticipation of the impact the Knowledgebase will have on people living with childhood dementia both in Australia and overseas.
The Childhood Dementia Knowledgebase is now available as a public resource. Register for access to the Childhood Dementia Knowledgebase here.
