CFNZ is making progress on a national research strategy designed to deliver real benefits for people with CF.
The strategy is the product of a workshop organised by Cure Kids and CFNZ in 2018 for researchers, clinicians and members of the CF community. One of the key findings was the need for an interconnected research, clinical and community strategy, and someone to drive it – hence the joint appointment of Dana Felbab as research development manager.
The aim is to identify research priorities for our CF community, connect the CF clinical and research communities locally and internationally and determine how New Zealand can contribute to global scene. Five key elements to achieving this are outlined below.
The PORT CF registry is vitally important to the future of CF research in New Zealand. This database is internationally regarded due to its high coverage of the New Zealand CF population. It could be improved further to make it more complete, more visible and more useable by healthcare professionals, the CF community and researchers.
New Zealand’s smaller CF population is an advantage for research, and the CF community has a strong track record in driving better care, both nationally and internationally. The creation of a community portal would connect people with CF even more directly with researchers, by:
A first step would be to ask people for their top three CF challenges that they would like researchers to focus on.
Some excellent CF research is happening in New Zealand, but funding applications tend to be driven by individual teams rather than as part of a cohesive plan. CF research would benefit from greater coordination within New Zealand as well as stronger links to clinicians and to international efforts.
Initial steps include plans to:
A key goal for CF clinical care is to make sure all New Zealanders have access to the same best practice care, no matter where they live. People with CF would benefit greatly if national or international research was translated into improved clinical practice. We have a well-connected paediatric CF network but the adult CF network needs development.
CF clinicians currently have very little time available for research. With an adequately supported CF clinical network, however, New Zealand could undertake smaller, practical initiatives that deliver better results for patients, as well as benefiting the international community.
Suggested steps to creating a clinical and research network include:
The initial focus could be on creating a telemedicine service for New Zealanders, which would itself be the subject of a research project.
New Zealand is a great location for clinical trials because many expensive new CF drugs are not used here, creating what is known as a drug-naïve population. Sponsors are reluctant to fund studies here, however, due to low patient numbers. Part of the research strategy involves building stronger connections with funders and overseas pharmaceutical companies to explore how New Zealand patients can be more involved in clinical trials.