I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.
At one level, what we want to capture is data which parallels that collected in drug trials. The standards seem to be things like
Number of relapses
Change in the number of lesions on MRI
Changes in EDSS and other subjective measures of MS disability
Timed walking tests
and so on.
These would answer the question of how CCSVI treatment stacks up against MS drugs, though not necessarily, the relationship between CCSVI and MS.
As an unfunded, voluntary, patient-driven registry, not everyone would have MRI results pre- and post- nor physician-assessed testing. Things like relapses might be tightly defined, again, both pre- and post- treatment, as relapses requiring hospitalization and/or medical treatment, not just self-assessed relapses though both could be reported, noting whether they are self-assessed or fit some other criteria.
Although it is controversial, patients can serve as their own controls in a sense by comparing their pre- and post- experience in things such as relapses and other relatively objective criteria such as timed walks.
Since we know at this stage that a lot of people with MS have CCSVI whether these conditions are related or not, perhaps it will be useful to simply identify and track the symptoms and signs of CCSVI that are likely improved by Percutaneous Venoplasty, a minimally invasive procedure done under local anesthesia
(Had to try that phrase on for size.)
So we would be looking at identifying and measuring a set of symptoms, pre- and post-procedure which are likely to specifically respond to CCSVI treatment and improved cranial-spinal blood flow such as:
sensation/tingling in various appendages
feelings of coldness in various appendages
changes in urinary control
sensitivity to warm temperatures
and these borrowed from the tracking sticky:
Number of relapses since first CCSVI intervention
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates)
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update
MSIS as of this update
As well as these from the Kuwait:
All patients reported improvement ( 1 month) :
Improvement or disappearance of Numbness
Loss of Fatigue and increased energy
Improvement of power (foot drop)
Improvement visual acuity (No blurred vision)
Reduced electrical sensation
and so on.
This latter list would be useful now as a list of things that can be fixed when CCSVI is treated regardless of whether there is a relationship between CCSVI and MS and regardless of whether treating CCSVI "cures" MS. The issue is not MS. The issue is remedying the disabilities caused by impaired cerebrospinal blood flow as a result of cerebrospinal venous malformations. A list like this is something to take to the IR's and vascular surgeons as part of the case for treatment.
Putting this list together and tracking it takes neurology out of the discussion at this phase. The neurological questions can then be pursued at leisure with the paltry funding coming from the MS Societies, but we can get on with treating a debilitating vascular problem and assembling data needed to assess the value of treatment as well as other information such as the relationship between specific malformations and disability, if such exist.
What might be very useful would be to get all the current lists that are part of the IRB submissions and research proposals to compile a single master list and to obtain patient input on these lists, especially from those who have undergone Percutaneous Venoplasty, a minimally invasive procedure done under local anesthesia
. That would include: Kings County, Stanford, Vancouver, Hamilton, Kuwait, Simka, Zamboni, et alia. That way we might build a master registry with this data with contributions from treatment centers that are not involved in research.
The quicker we can gather this data, the faster we should be able to get a number of centers up and running to treat the 2.5 million requiring treatment for their vascular problems.
Although perhaps not an ideal tool, Google Docs provides some basic tools for collecting the data and restricting access in a way that probably meets HIPPA requirements for protection of patient privacy and Google Sites provides a quick and dirty web presence for managing the data collection. Happy to volunteer to build both if this makes sense.