ACMCRN has your back-- and burning feet-- two main areas where Arachnoiditis usually hits. Our Collaborative Research Network was created in 2017 in order to bring light to this rare disease and a voice to those who suffer with it.
Arachnoiditis is considered a rare disease throughout the world, although it was previously perhaps best known only in those locations globally with high rates of Tuberculosis (TB), as TB can create its own form of Adhesive Arachnoiditis.
Unfortunately, up until recently, most rare diseases had very limited research and even fewer treatments available, because of very little historical interest by researchers and the pharmaceutical industry. Most pharma and businesses felt that whatever treatment they discovered would make little money, given their assumptions about the numbers who would want to buy their treatments.
But with the advent of high speed internet, social media groups, and software dedicated to the rare disease cause, a paradigm shift has occurred in the ways clinical research in rare disease can be performed.
Prior to this shift, it was very difficult to organize and run a single protocol across many geographical areas, requiring significant resources to create multiple site administration teams, including professional recruitment costs and project management.
For most diseases considered rare, the lack of patients with the disease meant there was simply never enough funding available to cover these most basic research costs. For all these reasons, the research into Arachnoiditis to date has been slow to non-existent, with only a handful of dedicated practitioners leading research and education efforts, and even fewer putting these protocols and recommended treatment agents to the test.
Thanks to the advent of high speed internet available around the world, and social media programs like Facebook and Zoom, many of these previous obstacles to research have been quickly resolved. Facebook and Google Groups had become an Arachnoiditis community meeting post of some kind, where those with Arachnoiditis living anywhere in the world could easily find peer groups to educate and support them in adapting to their new illnesses.
Soon leaders in other rare disease communities were coming together to teach each other how to use these new tools in service to their common education and research goals.
Cooperative communities like Beacon (through Europe's Rare Disease Organization known as EURORDIS), Genetic Alliance, NORD and more have developed software tools and platforms that have assisted rare disease groups in the development of patient registry/research infrastructure, IRB approved clinical studies and more. We are on the cutting edge of this great new era in clinical research for rare disease and are helping our Arachnoiditis community make the most of these new opportunities!