MYelopathy NAtural History (MYNAH) Registry has demonstrated substantial growth and progress across multiple domains since the concept was first presented and awarded the Best Clinical Presentation at SSS 2022. Patient recruitment increased year-on-year 33%, from 60 to 80 participants, reflecting improved engagement and expanding clinical interest in the registry. Additionally, two new study sites were approved, bringing the total number of participating sites to 15 across Australia.
Despite expansion, implementation has not been without challenges. Navigating multiple local health districts proved complex due to jurisdictional variation and inconsistencies in state-based legislative requirements. These factors highlighted the need for harmonised governance frameworks to support multicentre registry operations.
A comprehensive feasibility analysis is underway. This includes an audit of degenerative cervical myelopathy diagnoses to strengthen case ascertainment, alongside a patient feedback survey assessing registry acceptability and potential expansion to New Zealand. Of the 64 surveys distributed, 10 responses were received. Feedback indicated that participation in the MYNAH Registry was not perceived as intrusive, distressing, or inappropriate. The primary motivator for participation was a desire to contribute to research, while others joined following surgeon recommendation. Preferred follow-up intervals varied, with equal preference for “as required” and 12-monthly follow-up, and fewer responses indicating 6-monthly or no follow-up. Overall, feasibility was rated positively by 9 participants, with only one reporting otherwise.
Looking ahead, efforts are underway to co-design a new registry database at the Royal Adelaide Hospital to monitor quality of care within the spinal unit. This initiative involves active consumer and stakeholder engagement in partnership with the Central Adelaide Local Health Network (CALHN) Digital and Strategy team.
The registry has secured $10,000 in funding through the CALHN HSCGB scheme and produced three peer-reviewed publications, including the groundbreaking biomarker study. Collectively, these achievements position MYNAH for continued growth by another 40% with potential ANZ expansion.