ClinicSpeak: NEDA-5

Should NEDA-5 be the new normal? #ClinicSpeak #MSBlog #MSResearch

"To make a difference to the way we treat and manage MS we need to remove our blinkers. I have already discussed the issue of the EDSS and how it has misshaped the field of MS and what we need to do to get away from an EDSS-centric view of disability. The next thing we need to do is reassess the role of the MRI in the management of MS. The other day I heard from a patient that their previous neurologist did not believe they had had a relapse as  their MRI did not show any new lesions. It is obvious to me that this particular neurologist had delegated clinical acumen and common sense to an MRI scanner. Of course you can have a relapse with an MRI that does not show new lesions. The resolution of an MRI scan is probably in the order of 4-5 mm and any lesion smaller than this will not be detected; a microscopic lesion in an eloquent site can cause a relapse that no MRI will detect. Then there is the issue of inter slice gap. The MRI is essentially a series of 2D images stacked together to create a pseudo-3D image. Clearly if the gap between these images is relatively large you could miss lesions between the slices. Finally, there is the problem with the MRI reader. It is very easy to miss new lesions and even with expert neuroradiologists the interrater agreement is far from 100%. In other words the MRI and the neuroradiologist are far from perfect."

"Since we have starting measuring spinal fluid neurofilament levels it has become clear to me at how poor MRI is at measuring the impact of MS. Several patients have had stable MRI scans (NEDA-2), but feel they are not doing well or progressing. When we have performed a lumbar puncture on these patients to measure their CSF neurofilament light chain levels we find them to be raised. In other words MRI is missing some MS pathology. What we now need is a randomised clinical trials done in MSers with stable MRIs (no new or Gd-enhancing lesions) with raised CSF neurofilament levels to either escalate, or switch, DMTs and to compare their outcome to those who stay on their existing therapies. In other words to test the concept of NEDA-5; treat-2-target of normalising CSF neurofilament levels. It is clear that getting NEDA-4 into clinical practice is proving harder than one would have envisioned. There are simply too many problems with using brain atrophy in clinical practice."

"May be we can leapfrog brain atrophy and simply target CSF neurofilament levels. Could this be our new normal? Thank you for rising to the challenge and responding to our survey on the concept of the new normal. the following are the preliminary results of the survey."

New normal survey results march 2016 forms from Gavin Giovannoni

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