Myelopathy.org Featured in Spinal News International
Myelopathy.org was featured in Spinal News International to celebrate the launch of our new website: “Myelopathy.org launches new website to better support those with degenerative cervical myelopathy.” Below is an excerpt of the article:
Myelopathy.org, which was founded in 2017 as a collaborative information and support initiative for those affected by degenerative cervical myelopathy (DCM), has announced the launch of its new website which it says offers a wealth of contemporary and evidence-based information that can help to complement the routine care of those with DCM, but also to help raise awareness among non-specialist healthcare professionals.
Myelopathy.org brought together the work of academic neurosurgeon, Mark Kotter (Cambridge, UK) and Benjamin Davies (Cambridge, UK), a trainee academic neurosurgeon with the Myelopathy Support Facebook group which was set up by Iwan Sadler who has been living with DCM since 2014.
Kotter and Davies initially set up Myelopathy.org to better engage with people who have DCM after they both become interested in the condition through their research into regenerative medicine and development of UK NHS care pathways. Sadler was diagnosed with DCM in 2014 and feeling increasingly alone and frustrated by the lack of information and support he developed his own awareness campaign and one of the first Facebook community pages for DCM.
The AO Spine RECODE-DCM Top 10 Research Priorities Go Global!
In February 2022, we achieved a major milestone for DCM research, with the publication of the Special Issue of Global Spine Journal “Transforming Care for Degenerative Cervical Myelopathy: The Top 10 Research Priorities.” Jointly produced by the AO Spine RECODE-DCM group and the Editors of Global Spine Journal, this ground-breaking Special Issue brings together insights into DCM from the world’s key opinion-leaders for the first time in one publication. Each of the priorities is examined in turn, with the authors setting the research questions in context and, crucially, pinpointing effective strategies for addressing them.
Establishing the Top 10 Research Priorities was one challenge; but ensuring that they are widely publicised and resolved is the challenge to come. By providing strategies for addressing the questions, the authors hope to stimulate future studies that are efficient and robust. Supplying answers to these key questions is the most powerful opportunity to improve clinical outcomes for people with DCM. Global Spine Journal is the ideal publication for the priorities’ widespread dissemination because it is fully open-access and free for anyone to read.
The launch of this pivotal Special Issue is generating a real buzz of positivity in the DCM community! We hope that its publication will serve as an inflexion point, propagating global awareness of our mission and inspiring research into the questions that matter most to those with DCM.
Please help Myelopathy.org to raise awareness of DCM among the scientific community, by promoting the Special Issue to your healthcare professionals! You can download it free-of-charge.
NIHR POLYFIX DCM Trial
On the 1st July 2021, funding commenced on a study led by Mark Kotter and Ben Davies to determine the optimal surgical management for certain cases of DCM.
Surgery on the spine may be performed either from the front (anterior) or from the back (posterior). In the UK, there are two main posterior options: laminectomy alone; and laminectomy and fusion. The choice of surgical procedure, rather than being evidence-based, is currently left to the discretion of the treating surgeon. This leads to variation in practice, with implications for both the patients and the healthcare providers.
The POLYFIX-DCM trial will establish the optimal surgical management, following patients’ functional outcome over 2 years following surgery, as well as other critical measures such as pain, quality of life, and cost-effectiveness.
DCM COINS Funding Award
Myelopathy.org was awarded an Evelyn Trust Health and Wellbeing Grant to develop the first Core Information Set (CIS) for DCM. CISs represent baseline information intended to facilitate a dialogue between patients and professionals in order for patients to make better value-based decisions about their healthcare when multiple options are available. Learn more about DCM COINS on our Research Projects page.
Minimum Data Set for DCM Research
On 17th October 2020, the AO Spine RECODE-DCM group met via Zoom for a six-hour consensus meeting to agree upon the ‘minimum dataset’ for DCM research: that is, the Core Outcome Set, the Common Data Elements, and the Index Term for the disease. As Mark Kotter puts it, “This dataset is really the core information that needs to be collected to make clinical research robust, relevant and reliable.” The group brings together surgeons, allied healthcare professionals and those with lived experience of DCM.
Listening to the perspectives of people living with DCM, many of whom are members of the Myelopathy.org support group, has been absolutely key to the RECODE-DCM investigators. To illustrate why, Ben Davies has shown that, despite pain being reported as the most important outcome by patients, pain has been recorded as an outcome in only 25% of studies to date. Davies is committed to addressing this disconnection by measuring what matters most to people living with the disease.
In combination with the Top 10 priorities, the minimum dataset will accelerate research that improves the outcomes that matter most to patients. Michael Fehlings is optimistic about next steps: “All of this is about trying to help people with DCM to have a better quality of life. And we’ve come a long way. But we now, I think, are at an inflexion point where we can transform the care and the outcomes for people with DCM.”
Follow the work of AO Spine RECODE-DCM.
Points of Light Award
We are very proud to announce that on 26th February 2020 our founders, Dr Mark Kotter, Dr Ben Davies and Mr Iwan Sadler, were awarded a Points of Light Award by the UK Prime Minister Boris Johnson for their work in setting up the charity Myelopathy.org. Such a prestigious award helps to raise awareness of DCM at the highest levels, which we are hopeful will lead to better access to timely diagnosis and treatment for people with DCM.
In a personal letter to Iwan, Prime Minister Boris Johnson said: “I know you do this with no thought of praise or reward, but allow me to offer my own recognition of how you have bravely used your own experience to bring together DCM patients, providing support and a sense of community to the thousands of people with this rare condition.”
We would like to thank the Prime Minister for shining a light on DCM. There is still much to be done, but together we can make myelopathy matter.
Top 10 Research Priorities for DCM Agreed in New York Consensus Meeting
Myelopathy.org has partnered with the AO Foundation, an international, non-profit medical research and education foundation, to determine the top priorities in DCM research. The key to ensuring the validity of this process is equitably to include all those involved in the condition; people with myelopathy, their supporters, and healthcare professionals.
On 21st November 2019, the Priority Setting Partnership (PSP) of AO Spine RECODE-DCM held its final consensus meeting in New York and agreed on the top 10 research priorities for DCM. By setting the research agenda in this way, we will focus international efforts on questions that matter most; and, in doing so, we believe we have the greatest chance of changing outcomes.
At this PSP workshop, members of the Myelopathy.org community worked together with participants from multiple countries. Our survey had 417 people voting (56% Surgeons, 26% Supporters or People with DCM, and 23% Other Healthcare Professionals) on 74 research questions. The 74 research questions were narrowed to 26 by the steering committee members, and at the PSP the James Lind Alliance facilitated our process and the participants came to a consensus on the top 10.
We are deeply grateful to all involved in this milestone achievement! Next comes the work of ensuring that the priorities are widely disseminated, and that the research community worldwide steps up to the challenge.
Further updates on this important study.
UK Academic Spine Symposium
Myelopathy.org established the first UK Academic Spine Symposium at the Royal Society of Medicine on 7th May 2019. This meeting brought together the leaders in the field of academic spine surgery to talk about the clinical research studies they are involved in, for example the FORVAD trial, the NERVES trial and the GIRFT National Report. We hope that this event will prove to be a crucial forum for sharing scientific innovations and guidelines in the DCM field globally. Please check back for updates!