What does it take to get attention and establish credibility as a patient community with a complex, understudied disease? For the Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN), it was a scientific abstract describing information they gathered from their community of patients about living with Arachnoiditis, a debilitating condition that significantly impacts the lives of those affected. The leaders weren’t surprised by what the data said – they live with this debilitating disease themselves – but the newfound credibly with the research and medical community by speaking through a tool of science really changed their trajectory.
Lori Verton co-founded ACMCRN in 2017 to unite a professional community – inclusive of patients, healthcare providers, and researchers – to establish evidence-based clinical guidelines for the medical community to better serve people suffering from Arachnoiditis. Lori was a clinical research associate in pulmonology before becoming disabled with Arachnoiditis, likely from a botched spinal tap. The severe disabilities associated with Arachnoiditis forced her to leave her work in virology, but that certainly didn’t stop her from working: her goal now is to build a community and conduct studies. Lori felt scientific abstracts and publications were the realm of PhD researchers, but knew diversity and scale were critical elements of quality clinical research and that registry infrastructure was foundational to quality research.
“Early on, ACMCRN didn’t have a medical advisory board but I always felt that if we could get a one paper or abstract out, I might be able to prove that we were serious,” said Lori. Sadly, Lori’s trusted research partner and ACMCRN co-founder, Dr. Terri Lewis, passed away leaving Lori to push bravely forward in scientific writing alone. “Once we got an abstract out, suddenly, we had credibility. We added an epidemiologist who is an experienced PI, and two MDs to our research team who will help determine our three year research strategy,” shared Lori, with gratitude for all that Terri contributed prior to her passing. “In the meantime, we are recruiting from our international community and affiliates to build our patient registry.”
Arachnoiditis is not well understood, often underdiagnosed, and underrecognized by the medical community, with no cure, only treatments. Arachnoiditis can result from various factors, including invasive medical procedures and certain contrast agents. It leads to chronic pain, neurological symptoms, and a reduced quality of life for individuals and their families.
Importantly, ACMCRN wants you to recognize that Arachnoiditis is not a rare, historical disease, but a pressing health issue that continues to affect many today. Living with Arachnoiditis poses a myriad of challenges for affected families.
Firstly, it often leads to a lack of understanding and support within the family unit, as this condition is not widely recognized. Secondly, the quest for proper medical treatment can be demanding, involving the search for physicians willing to prescribe medications like steroids and potent NSAIDs, which can carry inherent risks. Additionally, the financial burden is a significant concern, as many individuals with Arachnoiditis lose their livelihoods due to the condition. Lastly, the frustration of enduring years-long waits, if at all, for a proper diagnosis.
A Path to Legitimacy, Awareness, and Hope
Eve Blackburn is ACMCRN’s vice president of patient engagement. Eve developed severe Arachnoiditis from a spinal fusion surgery in 1996. It took over 20 years for her to get an official diagnosis.
“When I was diagnosed, there was just one doctor focused on Arachnoiditis. I don’t think Arachnoiditis is a rare disease, and I believe this registry is the final key to proving that. I’ve personally helped 20 people in just my own state get a diagnosis,” said Eve. “The research and collaborations with doctors and academics that will happen as a result of having this registry will bring hope. I’m sure we will also find synergies and interconnections across other conditions and diseases. This work brings legitimacy, awareness, and hope.”
Patients are Research Leaders
Technological disruption happens when a new piece of technology changes the way consumers, businesses, and industries operate. In the case of Luna, we want patients to disrupt the research model and take their position as lead operators.
“We are considering this big data, new research method that hadn’t been available to patient communities before. We were really limited to doing research at a university or tertiary care hospital before this technology because of IRB requirements. Now that we have the people who run trials on board, and a helpful rare disease network, we can do this with technology,” said Lori. “The Luna platform is essential for this. We are getting around the higher education requirement to drive research, especially when we have the patients already recruited.”
Now, ACMCRN has encountered a new challenge: they need a much larger medical advisory board.
“Our epidemiologist team member has gone through the last three to five years of research articles – about 133 of them – and will be contacting the corresponding authors to join us in collaboration in the Luna research environment, in patient engagement, or maybe to join our Board. We look forward to working together on our research priorities, including the possibilities for biomarker development.”
In scientific publications, the first author position is a coveted spot. No matter how long the list of collaborating authors, the first author’s last name will be remembered, promoted, and mentioned in every future citation of the work. First author credit signifies the individual that has provided the greatest intellectual contribution. We look forward to a future where individuals like Lori and Eve – living with the disease they are also leading advocacy for – powered by disruptive technology, assume their rightful position are first authors.
Resources and More
Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.