MND Australia

MND Clinical Research Learning Institute® (CRLI)

Do you want to learn how to make an impact in MND research beyond participating in clinical trials and research projects?

MND Australia plans to host the 2nd Australian MND Clinical Research Learning Institute® (CRLI) in 2024. Details will be made available in early 2024.  

About CRLI

The MND Clinical Research Learning Institute® (CRLI) is a two-day program that educates attendees on the research process and development of new treatments. The program was originally developed by the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS). It was created in USA in 2011 by the director of the ALS Clinic at Duke University School of Medicine, Richard Bedlack, to facilitate direct interactions between researchers and people with ALS and their caregivers.

Through the learning institute they have trained over 500 Research Ambassadors who are now contributing to MND advocacy at many levels in the US and internationally. Fifteen ALS-CRLIs have been held to date at various locations within the United States. From these engagements, researchers have been prompted to formally include patients in the design process, to design more patient-centric trials and to create new ways to help patients find trials. Research ambassadors are improving awareness and clearing up misconceptions about participation in research, improving research availability, and helping to create more patient-centric trial designs.

In November 2022 we ran the first CRLI program in Australia and from that we have established our own cohort of Australian Research Ambassadors. 

The object of the workshop is to empower attendees to be strong advocates and contribute their lived experience voice to the field of MND. People with MND, caregivers, and family members are all encouraged to apply. There will be limited places available hence there is a simple application form asking you to describe the benefits you think you will gain from the program. 

Following completion of the workshop, attendees will be certified as an MND Research Ambassador® and it is hoped you will embrace this new role and pledge to educate and advocate to/for others living with MND and decision makers

The program will teach you about the research process, how to critique a scientific publication, review the MND treatment pipeline, and explain barriers to success and opportunities for overcoming these barriers via education and advocacy.

During the workshop, our speakers and moderators and previous attendees will be available to you for answering questions, offering suggestions, and mentoring.