The Lymphoedema Registry
"The Australasian Lymphology Association have a grant from IBM to create a patient registry in New Zealand and Australia of those who have lymphoedema. This is a wonderful opportunity to gather information about the extent of the problem, what is offered for treatment and how it affects people’s lives. With this information we can better understand the cost of poorly managed lymphoedema with a goal of having better preventative strategies. We will be in a strong position to lobby government for more equitable services throughout NZ with this information."
Deb Hurt,NZ Representative, Australasian Lymphology Association
About the Registry
(for more information and to participate, please visit the Lymphoedema Registry site)
The Lymphoedema Registry is a database that provides a way to collect information from people living with lymphoedema. This information is then collated and analysed using an IBM statistics data analysis program.The Registry will be used to inform the lymphoedema community and health service providers of the experience and needs of people living with lymphoedema.
The Registry aims to improve the lives of those living with lymphoedema by using the data to collaborate with organisations to advocate for improved treatment and to provide statistics for public health information and research. To join the registry, you will be asked to complete a short survey - for more information, click here.
A national lymphoedema registry allows the lymphoedema community to provide quantifiable data on the number of individuals with the condition, their associated health problems, and use of treatments.
Having a national patient registry means being able to answer fundamental questions about the lymphoedema population within your country – such information is invaluable for improving the lives of people with lymphoedema.
The data in a registry has strategic power for lobbying and the ability to prove to authorities that people with lymphoedema exist.
Participation is power to allow your voice to be heard. Join by completing the short on-line survey to add your voice to others living with lymphoedema. Lymphoedema is a hidden condition with poor access to needed therapy.