AO Spine RECODE-DCM

REsearch Objectives and COmmon Data Elements for Degenerative Cervical Myelopathy

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

Research Priorities

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

Minimum Dataset

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

Documentation

Naming DCM

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

Our team

Meet the AO Spine RECODE-DCM steering committee members, global partners, and the management group.

Mark Kotter

Principal Investigator, Management Committee Member

NIHR Clinical Scientist & Honorary Consultant in Neurosurgery, University of Cambridge, Cambridge, UK.

NIHR Academic Clinical Fellow in Neurosurgery, Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, University of Cambridge, Cambridge, UK.

Benjamin Davies

Co-principal Investigator, Management Committee Member

Brian Kwon

Steering Committee Member

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

Michael Fehlings

Steering Committee Member

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

Carl Zipser

Carl Zipser

Steering Committee Member

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

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

Shekar Kurpad

Steering Committee Member

Vafa Rahimi-Movaghar

Steering Committee Member

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

Bizhan Aarabi

Steering Committee Member

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

James Harrop

Steering Committee Member

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

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

Armin Curt

Steering Committee Member

James Guest

Steering Committee Member

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

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.

Angus McNair

Steering Committee Member

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

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

Julio Furlan

Steering Committee Member

Iwan Sadler

Steering Committee Member, Management Committee Member

DCM Patient Representative & Director of Myelopathy Patient Support at Myelopathy.org, Wales.

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.

DCM Patient Representative, UK.

Julia Carter

Steering Committee Member

Margot Miller

Steering Committee Member

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

Timothy Boerger

Steering Committee member

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

Paige Howard

Steering Committee Member

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

DCM Patient Representative & Administrator at Myelopathy.org.

Shirley Widdop

Steering Committee Member

Carla Salzman

Steering Committee Member

DCM Patient Representative, USA.

James Milligan

Steering Committee Member

Family Medicine Physician, Centre for Family Medicine Family Health Team & McMaster University, Ontario, Canada.

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.

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

Robert Chen

Steering Committee Member

Jefferson R Wilson

Steering Committee Member

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

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.

Ricardo Rodrigues-Pinto

Steering Committee Member

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

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

Lindsay Tetreault

Lindsay Tetreault

Global Partner

Vanessa Hubertus

Global Partner

Neurosurgical Resident, Charité Universitätsmedizin Berlin, Germany.

Rohit Amritanand

Global Partner

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

Jibin Francis

Global Partner

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

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

Nish Srikandarajah

Global Partner

So Kato

Global Partner

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

Aria Nouri

Global Partner

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

Pia Vayssiere

Global Partner

Neurosurgery Resident, Geneva University Hospitals, Switzerland.

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

Peter Vajkoczy

Global Partner

Wilco Peul

Global Partner

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

Juan Jose Zamorano

Global Partner

Spinal Surgeon, Clínica Alemana de Santiago, Santiago, Chile.

Ralph Stanford

Global Partner

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

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

Vincent Healy

Global Partner

Mazda Farshad

Global Partner

Professor and Chair of Orthopedic Surgery & Chief Medical Officer, University of Zürich, Switzerland.

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.

Tony Williams

Global Partner

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

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

Marcelo Valacco

Global Partner

Karlo Pedro

Global Partner

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

Olesja Hazenbiller

Management Committee Member

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

Toto Gronlund

Management Committee Member

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

Undergraduate Medical Student, University of Cambridge, Cambridge, UK.

Oliver Mowforth

Management Committee Member

Danyal Z Khan

Management Committee Member

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

Michael Betz

Global partner

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

Myelopathy.org

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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