Background: Degenerative Cervical Myelopathy (DCM) is the most common cause of non-traumatic, chronic spinal cord dysfunction worldwide, causing debilitating disability with a diminishing quality of life. The natural history of DCM is poorly understood. This is a preliminary report of the first 60 patients recruited to the MYelopathy NAtural History (MYNAH) Registry.
Methods: MYNAH Registry is an investigator-initiated, multicenter, prospective, non-interventional, longitudinal, national observational study (Registry ID ACSQHC-ARCR-258). Given the observational nature of the Registry, participants' clinical management plan is neither changed nor affected. Participants are recruited via an opt-in approach. A patient with DCM diagnosed by a spine/neurosurgeon after 1st January 2018 onwards is eligible to participate regardless of their surgical status. The Patient-Reported Outcome Measures (PROMs) are NDI, EQ5D5L and EQ-VAS; and the Practitioner-Reported Outcome Measures (PrROMs) are mJOA Score and Nurick Grade.
Results: Sixty participants (n = 60) have now been recruited of which male participants 34 (56.7%) and females are 26 (43.3%), with a mean age of 62.3 years (SD 14.1) and biospecimens for Proteomics have been collected from 33 (66%) participants. The median mJOA Score was 16.5 (8-18), with myelopathy severity recorded as mild in 42 (70%), moderate in 13 (21.7%) and severe in 5 (8.3%) participants. Median Nurick Grade 0 (0-5), NDI 14 (0-45), EQ5D5L Score 0.850 (-0.288-1) and EQ-VAS 70 (10-96).
Conclusions: The MYNAH National DCM Registry in Australia is a novel spinal surgical initiative, that will inform the decision(s) to proceed with the scientific, evidence-based and personalised management of DCM globally in the future.
Keywords: degenerative cervical myelopathy; longitudinal cohort; observational study; patient registry; prognosis; study protocol.
© 2024 Royal Australasian College of Surgeons.