AO Spine RECODE-DCM

Quarterly Newsletter, June 2022

AO Spine RECODE-DCM aims to accelerate research to improve outcomes in DCM. By bringing those who live with DCM together with those who treat it, our international multi-disciplinary collaboration is closing knowledge gaps. 

AO Spine RECODE-DCM Core Measurement Set Defined in Las Vegas
The participants at the Core Measurement Set consensus meeting: Back row, left to right, Allan Martin, Nader Fallah, Olesja Hazenbiller, Lindsay Tetreault, David Anderson, Alvaro Yanez Touzet, Timothy Boerger, Caroline Treanor. Front row, left to right, James Guest, Brian Kwon, Benjamin Davies, Mark Kotter, Lisa Petermann, Tammy Blizzard. The group comprised a broad range of healthcare professionals with much-valued representation from people living with DCM.

The third and final consensus meeting took place on 1 June 2022 at the Global Spine Congress in Las Vegas, Nevada, USA. The healthcare professionals of RECODE-DCM came together, with much-valued representation from people living with DCM, to decide which measurement tools to use in all DCM research going forward. Factors which were considered were the tools’ quality, popularity, feasibility to use (i.e. not too onerous on the patient) and how relevant they were to the core outcomes.

The following measurement tools were selected by consensus:

  • The modified Japanese Orthopaedic Association Score (mJOA)
  • The SF-36 Life Impact Scale
  • The Neck Disability Index
  • The Spinal Adverse Events Severity System

These tools were felt to be the best options at present for a Core Measurement Set. All investigators should find opportunities to extend these assessments in their trials, depending on their research question. 

Read the full story.

Update from the Incubators

Our hardworking special-interest groups meet regularly to drive advances in three of the Top 10 Research Priorities. New members are being added all the time, and momentum is growing.

The Diagnostic Criteria incubator members are working on a signs and symptoms review, to generate a solid framework for ruling DCM in and ruling it out.

The Natural History incubator members are undertaking a survey to establish current practice for asymptomatic cervical cord compression, and mild myelopathy.  The survey so far has almost 600 responses, and will be closed after circulation through CSRS in July.

The Peri-Operative Rehabilitation incubator members are designing the world’s first and largest scoping survey, which is nearly ready to be sent out to healthcare professionals and patients to establish what rehabilitation there is at present, what the evidence is, and how we can do better.

For more information, or if you would like to contribute to the incubators, please email recode@myelopathy.org.

External Notable Research
  • Crucial Surgical Question: Laminectomy Alone, or Laminectomy with Fusion?
    The only current treatment for DCM is surgery, and a number of different operations are used. The aim of surgery is to create space for the spinal cord. Often surgery has to be performed at multiple levels of the spine to remove the compression. Surgery is able to stop further deterioration and lead to some improvements. For those who need surgery from the back of their neck, there are two options: (1) removal of bone behind the spinal cord (laminectomy), or (2) removal of the bone and stiffening of the neck using metal implants (laminectomy and fusion). At present we do not know which of these approaches is better. Stiffening (laminectomy and fusion) of the neck restricts movements but is able to prevent longer term malalignment of the spine, which may otherwise affect 6 in 10 people. Malalignment of the spine can be painful and may require further surgery. Some findings suggest that malalignment may cause further spinal cord damage in the future. Only removing the bone (laminectomy) is a simpler and cheaper option and does not reduce range of movement in the neck. Surgeons advocating for one or the other approach are split approximately half and half. Finding out whether one approach is superior is an important research priority according to both patients and professionals.

    Two multi-centre trials are imminently starting to evaluate posterior decompression (laminectomy) and posterior decompression with fusion (laminectomy and fusion): POLYFIX-DCM led by Dr Benjamin Davies and Dr Mark Kotter from the UK, and MyRanC led by Dr Anna MacDowell from Sweden.

    This builds on interesting data from a propensity matched analysis of the Swedish Spine Registry [1], and secondary analysis of the CSM-S trial, which calls into question the merits of routine fusion following posterior decompression for DCM, a practice that has been increasingly adopted globally.

    Listen to the discussion in this episode of the Myelopathy Matters podcast.

    1. de Dios, E., Heary, R.F., Lindhagen, L. et al. Laminectomy alone versus laminectomy with fusion for degenerative cervical myelopathy: a long-term study of a national cohort. Eur Spine J 31, 334–345 (2022).

  • Surveying Chronic Cognitive Dysfunction (CCD) in Individuals with a Spinal Cord Injury
    Our colleagues in Adelaide, Australia, Dr Anna Leonard, Prof Lyndsey Collins-Praino, Kavi Sivasankar and Dr Ryan O’Hare Doig, are working on a project looking at the prevalence, management, and treatment of chronic cognitive dysfunction (CCD) after spinal cord injury. They are seeking information from neurologists, neurosurgeons, orthopaedic surgeons and/or board-certified doctors working with SCI patients who are responsible for their primary care. They would appreciate it if any board-certified neurosurgeons and/or orthopaedic surgeons could kindly help, by filling out this 10–15-minute survey.

    The participation in this study is voluntary and anonymous, and the participant may withdraw at any time prior to the submission of survey responses. The submission of the survey will be considered as an indication of consent to participate.

    Access the survey questionnaire.

    If you have any questions, please refer to the Participant Information Sheet or contact sci_cog@adelaide.edu.au. Thank you.

Myelopathy.org Inspires Prize-Winning Research

Myelopathy.org is receiving entries for its inaugural research award for best piece of research aligned with a Top 10 Research Priority. In 2022, the prize will be awarded for the best primary clinical study or systematic review, unpublished or published during 2020–2021. This annual award will be judged by a panel of people with DCM, Trustees and Representatives from the charity’s Scientific Advisory Board. The winner will be invited to submit a blog post for the charity and join the Myelopathy Matters podcast series. The AO Spine RECODE-DCM management committee hopes that this new award will stimulate high-quality research focussing on the questions that matter most to people with DCM.

Could your research be in the running? To submit your entry, please email the following details to recode@myelopathy.org:

A covering letter stating:

  • Your name, country and place of work
  • The priority with which your work aligns
  • Why it is a significant contribution to the field

A manuscript with a short synopsis of your study:

  • Rationale
  • Findings
  • Conclusions

We look forward to a high standard of competition!

Thank You Again for All Your Help and Support

This project is very much a sum of all its individual parts, and it would not have happened without your contribution.

Please feel free to contact AO Spine Knowledge Forum SCI project manager, Olesja Hazenbiller, and Dr Benjamin Davies with any questions, feedback or ideas about next steps.

Sincerely,
The AO Spine RECODE-DCM Management Committee

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