AO Spine RECODE-DCM

REsearch Objectives and COmmon Data Elements for Degenerative Cervical Myelopathy

The AO Spine RECODE-DCM study has successfully achieved its goals to define the top research priorities for Degenerative Cervical Myelopathy (DCM), agree on a name for the condition, and create a research toolkit with a minimum data set for researchers to use.

With the landmark study, AO Spine brought all stakeholders around the same table and took a leap towards accelerating knowledge discovery to improve patient outcomes. It's critical that scientist and funders now step in.

AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (AO Spine RECODE-DCM) is an international, multi-stakeholder initiative to create a 'Research Toolkit' that helps accelerate knowledge discovery and improve outcomes in DCM.

What is Degenerative Cervical Myelopathy (DCM)?

DCM is a condition in which degenerative arthritic changes in the neck (cervical) cause compression and impairment of the spinal cord (myelopathy).

  • In DCM, a spinal cord injury (SCI) happens in slow motion.
  • Whereas acute traumatic SCI is well recognized, public awareness of DCM is low.
  • DCM affects 2% of adults globally. As our population ages, incidence is rising.
  • DCM causes pain, disability and poor quality of life.
  • If diagnosed early, surgery can be beneficial, but recovery is often incomplete.
  • DCM has been known by other names including cervical stenosis, cervical spondylosis, and spondylotic myelopathy.
  • Progress is urgently required.

AO Spine RECODE-DCM Community

Selected leaders and experts are championing research priorities as part of the AO Spine RECODE-DCM Knowledge Translation and Implementation initiative. They raise awareness and understanding of DCM among clinicians, other health professionals, and the public, promote commitment from leading authorities worldwide and focus research on specific research priorities.

Find out how you can be a part of this global research initiative to make a difference to research and to people living with DCM.

Research toolkit

The AO Spine RECODE-DCM group created a ‘Research Toolkit’ to equip scientists with the tools to make their studies robust, comparable, and focused on the outcomes that matter most for people with DCM.

There are three components:

1. Top 10 Research Priorities, identified as the most important research questions.
2. A minimum dataset, to standardize outcome measures, making future studies robust and comparable.
3. An index term and definition for DCM, to enable a common language across the globe.

Research Priorities

We have created a list of top ten unanswered research questions, ranked through the James Lind Alliance Priority Setting Partnership.

Learn more

Minimum Dataset

We have created a standardized set of disease measurements that should be included in all DCM research.

Learn more

Naming DCM

We have established a consensus definition of DCM to inform international classifications, such as the International Classification of Diseases (ICD).

Learn more

AO Spine RECODE-DCM study outcomes

A summary of all supporting publications presenting data which informed the process can be found on our publications page.

Publications

Citing the AO Spine RECODE-DCM Research Priorities

To address the priorities, researchers require awareness of them. Please help to raise awareness among researchers by ensuring that all new DCM studies cite the research priorities correctly. This will help the worldwide DCM community to build on the solid foundation established by AO Spine RECODE-DCM.

Citation tool

Our team

  • Mark Kotter

    Principal Investigator, Management Committee Member. NIHR Clinical Scientist & Honorary Consultant in Neurosurgery, University of Cambridge, Cambridge, UK.

  • Benjamin Davies

    Co-principal Investigator, Management Committee Member. NIHR Academic Clinical Fellow in Neurosurgery, Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, University of Cambridge, Cambridge, UK.

  • Michael Fehlings

    Michael Fehlings

    Steering Committee Member. Past Chairperson, AO Spine Spinal Cord Injury Knowledge Forum. University of Toronto, Toronto, Canada.

  • Brian Kwon

    Steering Committee Member. Chairperson, AO Spine Spinal Cord Injury Knowledge Forum. University of British Columbia, Vancouver, Canada.

  • Angus McNair

    Steering Committee Member. NIHR Clinician Scientist, Center for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, UK.

  • Aria Nouri

    Global Partner. Neurosurgery Resident, Geneva University Hospitals, Switzerland & Visiting Scholar, Department of Neurosurgery, University of Cincinnati College of Medicine, USA.

  • Armin Curt

    Steering Committee Member. Professor for Paraplegiology and Medical Director, Balgrist University Hospital, Spinal Cord Injury Center, University of Zurich, Switzerland.

  • Bizhan Aarabi

    Steering Committee Member. AO Spine Spinal Cord Injury Knowledge Forum Steering Committee Member. University of Maryland. Baltimore, USA.

  • Carl Zipser

    Steering Committee Member. Neurologist, Spinal Cord Injury Center, Balgrist University Hospital, Zurich, Switzerland.

  • Carla Salzman

    Steering Committee Member. DCM Patient Representative, USA.

  • Karlo Pedro

    Global Partner. Neurosurgeon, University of the Philippines-Philippine General Hospital, Manila, Philippines.

  • Danyal Z Khan

    Management Committee Member. Academic Foundation Programme Trainee in Neuroscience, University of Cambridge, Cambridge, UK.

  • Delphine Houghton

    Steering Committee Member. DCM Patient Representative & Public Relations Lead, Myelopathy.org, UK.

  • Ellen Sarewitz

    Steering Committee Member, Management Committee Member. DCM Patient Representative & Partner of Goffin Consultancy, Healthcare Consultants, UK.

  • Geno J. Merli

    Steering Committee Member. Professor of Medicine, Chief Medical Officer & Co-director of Jefferson Vascular Center, Jefferson Medical College, Thomas Jefferson University Hospital, Philadelphia, USA.

  • Iwan Sadler

    Steering Committee Member, Management Committee Member. DCM Patient Representative & Director of Myelopathy Patient Support at Myelopathy.org, Wales.

  • James Guest

    Steering Committee Member. Professor of Neurological Surgery, Miller School of Medicine, Miami, Florida, USA.

  • James Harrop

    Steering Committee Member. AO Spine Spinal Cord Injury Knowledge Forum Steering Committee Member. Thomas Jefferson University. Philadelphia, USA.

  • James Milligan

    Steering Committee Member. Family Medicine Physician, Centre for Family Medicine Family Health Team; McMaster University, Ontario, Canada.

  • Jefferson R Wilson

    Steering Committee Member. Assistant Professor, Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Canada.

  • Jibin Francis

    Global Partner. Consultant Spinal Neurosurgeon with specialist interests in degenerative spinal disease, tumour and trauma. Cambridge, UK & Port Elizabeth, South Africa.

  • Jin Tee

    Global Partner. Associate Professor & Complex Spine and Neurosurgeon, The Alfred and Peninsula Health. Head, Spine and Neurotrauma, National Trauma Research Institute, Central Clinical School, Monash University.

  • Juan Jose Zamorano

    Global Partner. Spinal Surgeon, Clinica Alemana de Santiago, Santiago, Chile.

  • Julia Carter

    Steering Committee Member. DCM Patient Representative, UK.

  • Julio Furlan

    Steering Committee Member. Assistant Professor, Division of Physical Medicine and Rehabilitation, University of Toronto & Clinician Investigator, Toronto Rehabilitation Institute. Toronto, Canada.

  • Lindsay Tetreault

    Global Partner. Neurology Resident, New York University Langone Health, New York, USA.

  • Marcelo Valacco

    Global Partner. Consultant Spinal Surgeon & Spine Center Director, Hospital Churruca Visca, Buenos Aires, Argentina.

  • Margot Miller

    Steering Committee Member. DCM Patient Representative & Administrator at Myelopathy.org, Vermont, USA.

  • Mazda Farshad

    Global Partner. Professor and Chair of Orthopedic Surgery & Chief Medical Officer, University of Zurich, Switzerland.

  • Michael Betz

    Global partner. Consultant Spinal Surgeon & Assistant Professor, University of Zurich, Switzerland.

  • Mohamad Bydon

    Global Partner. Staff Neurosurgical Consultant & Associate Professor, Department of Neurologic Surgery, Department of Orthopedic Surgery and Department of Health Services Research, Mayo Clinic College of Medicine and Science, Rochester, Minnesota, USA.

  • Nish Srikandarajah

    Global Partner. Specialist Trainee in Neurosurgery & PhD candidate, The Walton Centre NHS Foundation Trust and the University of Liverpool. COS researcher.

  • Olesja Hazenbiller

    Management Committee Member. Research Project Manager, AO Spine Spinal Cord Injury Knowledge Forum, Switzerland.

  • Oliver Mowforth

    Management Committee Member. Undergraduate Medical Student, University of Cambridge, Cambridge, UK.

  • Paige Howard

    Steering Committee Member. DCM Patient Representative, USA. Admissions and Graduation Advisor, California State University, Bakersfield, USA.

  • Peter Vajkoczy

    Global Partner. Chairman & Professor of Neurosurgery, Department of Neurosurgery, Charité Universitätsmedizin Berlin, Germany.

  • Pia Vayssiere

    Global Partner. Neurosurgery Resident, Geneva University Hospitals, Switzerland.

  • Ralph Stanford

    Global Partner. Consultant Spinal Surgeon, Prince of Wales Hospital Sydney & Chairperson, Spinal Network Australia.

  • Ricardo Rodrigues-Pinto

    Steering Committee Member. Consultant Spinal Surgeon, Spinal Unit, Centro Hospitalar Universitário do Porto, Porto, Portugal.

  • Robert Chen

    Steering Committee Member. Chair in Movement Disorders & Professor of Medicine (Neurology), University of Toronto & Toronto Western Hospital, Canada.

  • Rohit Amritanand

    Global Partner. Consultant Spinal Orthopaedic Surgeon & Associate Professor, Department Of Orthopaedics, Christian Medical College, Tamil Nadu, India.

  • Shekar Kurpad

    Steering Committee Member. AO Spine Spinal Cord Injury Knowledge Forum Steering Committee Member. Froedtert & the Medical College of Wisconsin, Milwaukee, USA.

  • Shirley Widdop

    Steering Committee Member. DCM Patient Representative & Administrator at Myelopathy.org

  • So Kato

    Global Partner. Consultant Spinal Surgeon, The University of Tokyo Hospital, Tokyo, Japan.

  • Sukhvinder Kalsi-Ryan

    Steering Committee Member. Assistant Professor at the Department of Physical Therapy, University of Toronto. Clinician Scientist, Toronto Rehabilitation Institute-LC, University Health Network, Toronto, Canada.

  • Timothy Boerger

    Steering Committee member. DCM Patient Representative & Graduate PhD Student + Research Assistant, Dept of Physical Therapy, Marquette University, Milwaukee, USA.

  • Tony Williams

    Global Partner. Consultant Occupational Physician & Medical Director, Working Fit Limited, United Kingdom.

  • Toto Gronlund

    Management Committee Member. Advisor, James Lind Alliance, National Institute for Health Research, UK.

  • Vafa Rahimi-Movaghar

    Steering Committee Member. AO Spine Spinal Cord Injury Knowledge Forum Steering Committee Member. Sina Trauma and Surgery Research Center. Tehran, Iran.

  • Vanessa Hubertus

    Global Partner. Neurosurgical Resident, Charité Universitätsmedizin Berlin, Germany.

  • Vincent Healy

    Global Partner. Specialist Trainee in Neurosurgery, Royal College of Surgeons in Ireland and Beaumont Hospital, Dublin, Ireland.

  • Wilco Peul

    Global Partner. Professor & Chair, University Neurosurgical Center Holland, Leiden University Medical Center & The Hague, Netherlands.

Myelopathy.org is a non-profit organisation founded to raise awareness of degenerative cervical myelopathy and support patients, carers and professionals who live and deal with it.

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