RECODE-DCM – “Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy”. An AOSpine Knowledge Forum Spinal Cord Injury Project



 

Do you treat cervical myelopathy?

We need your views to shape international guidelines! Please complete a short survey: http://bit.ly/2Hm8fU2

 

RECODE-DCM – R esearch Objectives and Common Data Elements for Degenerative

Cervical Myelopathy”. An AOSpine Knowledge Forum Spinal Cord Injury Project

 

What problem are we addressing?

Degenerative Cervical Myelopathy [DCM], arises when arthritic changes of the cervical spine compress and injure the spinal cord.  It is estimated to affect up to 2% of adults.  Currently

few patients make a full recovery, instead living with life long disability and poor quality of

life 1 . Research advances are urgently needed.

However healthcare research contains many inefficiencies – it is esimated that 85% of healthcare research fails to deliver an actual or potential healthcare benefit. 2 Deficiencies in the design of research, especially failure to consult relevant stakeholders, are a leading contributor to this problem.
 

These problems also hinder DCM research; duplication and inconsistencies in reporting of outcome measures and data elements are well-described. 3,4 Moreover, the absence of a recognized index term in DCM adds to inefficiency by precluding efficient literature searches.
 

How can we address this?

To address these issues, organizations such as the James Lind Alliance (JLA) and Core Outcome Measures in Effectiveness Trials (COMET) have devised and advocated multi- stakeholder priority-setting partnerships and the development core-outcome sets.
 

The AOSpine Knowledge Forum Spinal Cord Injury (KF SCI) and the University of Cambridge are leading a JLA-informed initiative in DCM. RECODE DCM [Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy] is a collaborative project with ambitions of engaging all DCM stakeholders from across the globe to reach a consensus on a set of research priorities, a core outcome set, core data elements and a core measurement set for DCM. RECODE-DCM also aspires to achieve an international consensus on the definition of DCM.
 

We need your help!

The involvement of all stakeholders is essential to the success of RECODE-DCM. This includes all relevant health professionals (e.g. spinal surgeons, neurologists, family doctors, physiotherapists, rehabilitation specialists and nurses) and also patients, relatives and their caregivers. The overall objective of RECODE-DCM is to connect all stakeholders in a collective endeavor of shaping the future of DCM research to maximize improvements in the lives of people with DCM.

The process begins with a series of online surveys. We invite you to participate:

http://bit.ly/2Hm8fU2

We also ask for your help in reaching participants by disseminating the survey link:

  • to colleagues at your local hospital, university and healthcare institutions
  • throughout relevant organisations or networks
  • to your personal contacts.

Further information, including a detailed research protocol 5 can be found on the study website:  https://recode-dcm.com/ . Should you have any questions or concerns, please do not hesitate to contact  admin@recode-dcm.com or Olesja Hazenbiller (ohazenbiller@aospine.org), KF SCI Project Manager.

 

Thank you in advance.

References

  1. Davies BM, Mowforth OD, Smith EK, Kotter MR. Degenerative cervical myelopathy. BMJ .

2018;360:k186. doi:10.1136/bmj.k186

  1. Chalmers I, Bracken MB, Djulbegovic B, et al. How to increase value and reduce waste when research priorities are set. Lancet Lond Engl . 2014;383(9912):156-165. doi:10.1016/S0140-

6736(13)62229-1

  1. Davies BM, McHugh M, Elgheriani A, et al. Reported Outcome Measures in Degenerative

Cervical Myelopathy: A Systematic Review. PLoS ONE . 2016;11(8). doi:10.1371/journal.pone.0157263

  1. Davies BM, McHugh M, Elgheriani A, et al. The reporting of study and population characteristics

in degenerative cervical myelopathy: A systematic review. PLoS ONE . 2017;12(3). doi:10.1371/journal.pone.0172564

  1. Davies BM, Khan DZ, Mowforth OD, et al. RE-CODE DCM (REsearch Objectives and Common

Data Elements for Degenerative Cervical Myelopathy): A Consensus Process to Improve Research Efficiency in DCM, Through Establishment of a Standardized Dataset for Clinical Research and the Definition of the Research Priorities. Glob Spine J . 2019;9(1_suppl):65S-76S. doi:10.1177/2192568219832855

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