The 2022 inaugural Australian CRLI was held on Friday 11th and Saturday 12th November, via zoom. This event was hosted by MND Australia, in collaboration with Iggy Get Out and supported by GenieUs.
This is the program that was followed for the two days.
Please click here to view recordings of the two day workshop, and to view the slides shared by the presenters.
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), which is based in the US. It was created in the USA in 2011 by the director of the ALS Clinic at Duke University School of Medicine, Dr 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.
We now have the opportunity to bring the CRLI program to Australia and establish our own cohort of Australian Research Ambassadors to help advocate to improve the lives of those living with MND.
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. The 2022 program is now complete and we are hoping to run another in 2023. Please check in for details in the future.
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 will be available to you for answering questions, offering suggestions and mentoring.
If you need more information, email: firstname.lastname@example.org