Q: Does ACMCRN work with the Tennant Foundation? What's the difference or are they the same? 👥️
A:
ACMCRN is a registered nonprofit with international board members and an international reach.
(Created in 2018 by leaders in the original "Arachnoiditis" FB group).
Our vision is to collaborate world-wide with others providing awareness, education, peer support and professional research activities on the topic of #Arachnoiditis.
Our mission is to facilitate the creation of a united global effort to advance awareness understanding, education, research and treatment of this disease to assist #Arachwarriors and medical professionals wherever they are found across the globe. Collaboration moves us all ahead faster than going it alone.
We are open to sharing activities and events created by any organization that benefits Arachnoiditis patients, from anywhere in the world!
For most of our 8 years work, the Tennant Foundation has been a primary financial supporter of our efforts. We continue to work with Dr Tennant, sharing his body of work and complimentary to his Tennant Foundation research and educational activities.
💢What is different about ACMCRN and the Tennant Foundation regarding research?
1) ACMCRN is working on the studies that we assess (using our community data) are of the most use to the medical community regarding understanding the lived experience of patients. We will be first creating the groundwork information needed to establish our lived experiences and other variables that define our unique Arachnoiditis experience, gathered and communicated by our career research professionals using methods required by industry standards. By meeting these industry standards, we are able to share our results at professional conferences and in peer reviewed medical journals. Our first study met those objectives, being shared at 7 Pain, Neurology, Neuropathic, Neuropsychiatry and Rare Disease conferences in 2023/24.
Our first study looked at basic demographics of our community, which treatments we have tried and which ones have been either the most helpful or the most detrimental. Using AI to query our entire data collection, a new insight was determined from the data which has not been presented as a possible diagnostic indicator going forward. See video here:
We will be leaning into this question a bit more in subsequent studies.
(Our next survey will be advertised for participation soon!)
2) Most of the current knowledge we have to share to patients has come by learning from Dr Tennant's experience with patients and our own wisdom as patients and patient leaders, in my case, since 2008. Dr Tennant's body of work has always underpinned our work.
3) With regards to Research:
Our aim is to repeat his most unique studies using the the methodology and specific study requirements that match the rules for submission to peer reviewed quality medical journals and which can be presented at professional conferences. These standards are stringent, with requirements for certified study laboratories (which cost a lot), using statistical powering methods (having the required number of participants to ensure high quality analysis), IRB (ethics) approval from NIH approved Boards, where consent, data de-identification measures, protocols, materials, methods etc must be pre approved etc. Under the PEER alliance of Rare Disease research groups, we are learning from the rare disease research community as a whole, and can leverage the latest in these unique techniques and digital applications.
In order to be included in professional publications etc, we must adhere to the basic research requirements based on the Hague Convention Research which became universal in 1992.
ACMCRN has career researchers on board who have great experience ensuring these requirements are all in place, epidemiologists to choose best methods of testing and reporting, data analysts to crunch the data and researchers to write the results in the very specific manner required to be submitted to peer reviewed, well known medical journals. These are the journals which are subscribed to by medical schools and hospital libraries around the world.
Dr Tennant is leading the way by doing the first round hypothesis testing. We can learn new insights from his community based studies that can illustrate the most advanced of his ideas.
To go further, ACMCRN can springboard from his findings into more detailed, industry wide accepted studies which are required for submission to professional conferences and peer reviewed journals. As such, we take a LOT longer to do a complete study and each is much more costly.
But the benefits are that researchers, physicians and allied health professionals will see these end results in journals and at professional conferences, precisely because we extend his ideas to be tested under industry standards/journal requirements. Our studies are created in a way that would be acceptable to the FDA should we ever get to the stage where we can test out a repurposed drug, using the Rare Disease legislation provided for diseases without pharma interest, as most Rare diseases are in this spot. We simply don't have the patient numbers (aka pharma profit base) needed.
4) Its going to take us time, and a lot more money, to do testing that requires blood or tissue sampling, drugs or medical interventions. But its part of the long term plan.
Hopefully with future grant and fundraising success, we will be able to move forward, taking what Dr Tennant finds in his less formal studies and formalizing them, retesting, and meeting the requirements of the research and medical industry, and make changes to the treatment and understanding or Arachnoiditis by physicians worldwide.
Can you help us?
We need fundraising volunteers to plan yearly walkathon or similar events, those who are good at cold calling for items for silent auctions and those with corporate or non-profit fundraising or grant writing experience.
Is this you?
Or, maybe you can donate to our programs: www.acmcrn.org/donate.
Let's dream big together! Team work makes the dreams work!
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