National research strategy

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.

CF database

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.

CF community portal

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:

  • enabling individuals to have a say on research priorities
  • connecting people with CF together via social media
  • creating a strong community voice
  • giving individuals a say on how to improve their day-to-day management of CF
  • enabling practical, crowd-sourced studies
  • supporting individuals who need to travel to participate in CF research projects.

A first step would be to ask people for their top three CF challenges that they would like researchers to focus on.

Research community

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:

  • audit New Zealand’s current CF and related research
  • look for existing findings that can be translated into clinical practice
  • determine research priorities that include CF community preferences, exploit our research strengths and explore the unique aspects of CF in New Zealand.

CF clinical and research network

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:

  • training a network of clinicians around New Zealand with an award to recognise innovation in patient care/best practice
  • improving patient care by firstly capturing data from the PORT CF registry, then trialling an intervention and measuring impact
  • examining CF management, such as looking at day-to-day treatments to determine what can be dropped
    attracting younger people into CF care, e.g. clinical researchers and PhD candidates who are closer in age to people with CF.
  • creating a dedicated CF research fellowship.

The initial focus could be on creating a telemedicine service for New Zealanders, which would itself be the subject of a research project.

International connections

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.