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Posted by on Oct 31, 2018 in Bioethics, CRPS / RSD | 0 comments

CRPS research (31.10.2018)

CRPS research (31.10.2018)

Complex Regional Pain Syndrome (CRPS) is a mostly invisible neuro-inflammatory disease, which causes horrific pain. Many different types of pain, including neuropathic (nerve) pain and joint pain.

It also causes reduced joint mobility & range of motion problems, although no one (yet) knows why; so it’s often said to have a probable autoimmune component. I’ve written on this blog – repeatedly! – that there are no effective treatments for CRPS.

Today I spoke with someone who’s working to change that. Because I live in a large city, with two large university hospital centres, I was referred to a multi-disciplinary Pain Management Unit (PMU). It’s part of a large hospital, within the McGill University Health Centre (MUHC).

This PMU is a world-class treatment & teaching clinic, and they have an associated Centre for Research on Pain (CRU). I consider myself extremely lucky to be a patient there, to have access to this fantastic level of chronic pain care and specialists.

As part of my volunteer activities, raising awareness of CRPS and providing peer support to some other patients with this disease, I’ve connected with patients across Canada and in other countries. Many of these people are suffering, and don’t have access to this type of PMU.

This is a real problem for CRPS patients, because of the lack of good treatment options outside of a hospital setting – treatments that could be prescribed by a family physician, for example. Many of my treatments have been done in a hospital day-surgery operating room, so aren’t the type of interventions that could be done in a doctor’s office.

The person I spoke with today works at the CRU, and what we talked about was a potential new treatment. It’s a topical product; something that a patient would put on their skin. They’re recruiting patients to participate in a clinical trial, a research study, to test this new product.

I spent years managing a Research Ethics Board (an REB; called an Institutional Research Board or IRB in the US). The role of an REB is primarily to protect the rights of research participants.

So it seems somewhat like poetic justice that I might finally be able to participate in a clinical trial myself! I’ll write more about this research project, once I’ve had time to read the documentation. Stay tuned!

In the meantime, if you have CRPS or another type of neuropathic pain and would like information about this study, you can contact the CRU. Their contact information is at the bottom of their recruiting poster.

I’m not getting paid, or any other benefit, to promote this research. I offered to share information about it, because I know how important it is to find viable treatments for patients suffering with CRPS. This blog has always been, and remains, completely non-commercial ,-)

Clinical trial recruiting poster, from McGill University Health Centre (MUHC)

Clinical trial recruiting poster; McGill University Health Centre (MUHC)

 

 

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