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ACSQHC-ARCR-258

Prioritised clinical domain
Nil
Abbreviation
The MYNAH Registry
Registry contact

Dr Ashish D Diwan, University of New South Wales (UNSW), Sydney, a.diwan@unsw.edu.au

Year established
2023
Description

Degenerative cervical Myelopathy (DCM) is the commonest cause of spinal cord dysfunction worldwide. Clinical features include localised neck pain, impairment of motor functions in the upper and lower limbs, loss of bladder function that can eventually lead to paralysis and even death if treatment is not sought. Although surgical decompression of the spinal cord remains the mainstay of treatment, very few patients achieve complete recovery, and the majority of patients are left with life-long disability. Due to lack of a diagnostic criteria and many mimicking conditions, DCM is widely underdiagnosed and hence its true incidence and prevalence remains unknown.

The MYNAH (MYelopathy NAtural History) registry is a multi-centre, prospective, observational cohort study enrolling patients with Degenerative Cervical Myelopathy (DCM) across Australia. MYNAH Registry is the world's first registry to understand the natural history of DCM in a systematic manner. The purpose is to determine the natural history of DCM, to describe the influence of age, gender, smoking and BMI on outcome of DCM, to describe the demographics, comorbidities, genetic predisposition, disease severity and prognosis of DCM and to compare the outcomes between the operative and non-operative cases of DCM. Patients with a diagnosis of DCM by a spine surgeon or neurosurgeon from various participating clinical sites are included in the registry.

The outcome measures are Neck Disability Index (NDI), modified Japanese Orthopaedic Association Score (mJOA), EQ-5D-5L questionnaire and Nurick grade. Follow-up for all participants is conducted biannually, which includes completion of mJOA score, Nurick grade and clinical examination at their respective study site and completion of NDI and EQ-5D-5L questionnaires.

Reporting process
  • Shared with other clinicians
Patient Reported Outcome Measures (PROMs)
  • Neck Disability Index (NDI)
  • modified Japanese Orthopaedic Association (mJOA) Score
  • Nurick Grade
  • EuroQol Group EQ-5D-5L
Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • St George Hospital
  • St George Private Hospital

Private practices of:

  • Dr Ashish Diwan
  • Dr Prashant Rao
  • Dr Mark Davies
  • Dr Brian Hsu
  • Dr Mitchell Hansen
  • Dr Ali Ghahreman
  • Dr Saeed Kohan

Recruiting further sites on ongoing basis

Condition
Degenerative Cervical Myelopathy
Name
The Myelopathy Natural History Australian Degenerative Cervical Myelopathy Registry
Lead organisation
Spine Service, St George Hospital, SESLHD, University of New South Wales (UNSW), Sydney
Ethics approval reference
University of New South Wales (UNSW), Sydney HREC reference number: HC2207011
Preferred published date
Immediately
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