The MND Research Institute of Australia (MNDRIA) is proud to be part of a consortium of research organisations, clinical groups, patient-centred organisations and care providers who have won funding from the National Health and Medical Research Council (NHMRC) to collect real-time data to inform best practice services, research and enrolment in clinical trials.
The consortium was awarded an NHMRC Partnership Grant “MND: Patient-centred care for a progressive neurological disease - evidence driving policy” in April this year as part of a competitive application process. The NHMRC funding together with contributions from all stakeholders amounts to an investment of more than $2.5 million into patient-centred care over five years. MNDRIA's investment into the project will be leveraged more than four-fold.
The initiative is led by MNDRIA Research Committee Chair Professor Matthew Kiernan, co-director of the Brain and Mind Centre, University of Sydney. Importantly, the project recognises people living with MND and their families as being best placed to inform policy development and service design through their lived experience of a rapidly changing condition.
The project has three themes:
Theme 1. Empowering MND patients and their carers
This theme will deliver an app for mobile devices, which has the dual-purpose of improved patient-centred care while recording data needed for evidence-based policy. The app will be designed to capture
personal health and wellbeing data and support needs. It will connect important clinical information, which can be shared with family, among patients, carers, caring networks, health professionals and community-based service providers. People with MND will have input to service design and evaluation including the development of outcome measures, which can be used to track disease progression.
Theme 2. Unification and integration of data collection in MND
Different data collection systems will be brought together under one umbrella, making data collection more patient-focused and providing better feedback to people with MND, carers and clinicians. A clinical trials registry will help to quickly identify appropriate participants for future clinical trials. Clinicians need real-time records of patient clinical and genetic profiles to have trial ready cohorts of participants, optimising selection for clinical trials.
Theme 3. Integration of evidence to inform policy
Data will be used to provide an evidence-base to create national policies. This includes uniform national policies for patient-centred multidisciplinary care, and policies that enable national and international collaborations for linking genomic research and sharing clinical data