Registry Update – Reopening Expected July 2025
We’re making progress behind the scenes to bring the International Arachnoiditis Patient Registry back online through our new platform, DigitalCabinet.
Right now, our team is finalizing the ethics review process (IRB submission) and preparing the first round of survey questions with input from our international collaborators, including rare disease experts and patient advocates. The survey content is expected to be finalized by June 1st.
Once everything is approved, we anticipate launching the registry again in July 2025, just in time for Arachnoiditis Awareness Month.
Thank you for your patience and continued support as we work to relaunch this important tool for Arachnoiditis research and advocacy. Stay tuned to this page for updates.
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Resources
As we prepare for the Grand Reopening of the ACMCRN International Arachnoiditis Patient Registry in July, we want to ensure that all members have the resources they need to understand the value of patient registries.
To help with this, we are continuing to host our existing instructional video on the website. This video provides crucial insights into how registries function and why participation is so important.
Why You Should Watch the Video:
📌 Educational Value – The video explains the purpose of patient registries, how they work, and the critical role they play in research and advocacy.
📌 Timeless Insights – While we are transitioning to a new and improved platform, the core principles of patient registries remain the same. This video provides a strong foundation for understanding their impact.
As we move forward with our new registry platform, we will create updated instructional materials to reflect new features and processes. However, we encourage all members—especially new participants—to watch the current video to gain a deeper understanding of how their involvement directly contributes to advancing research and improving patient care.
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Overview of clinical trials and the process.
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Different study phases, meanings and timelines.
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Safeguards in place when participating in a clinical trial.
General Clinical Research Overview
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How new treatments are developed under specific requirements and different study designs.
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Regulatory oversight and guidelines are in place for the conduct of safe and ethical clinical trials.
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How clinical trials are adapting to make them more accessible for participants.
Basics of Clinical Trials
2023 POSTER ABSTRACT
This poster abstract is the result of a significant achievement involving 1250 survey respondents who willingly shared their medical histories and engaged in a ACMCRN survey through StuffThatWorks. This abstract, created in collaboration with Dr. Patricia Gomez Lorens and Lori Verton, encapsulates the insights gained from this extensive survey. It is designed as a research tool, akin to posters presented at conferences, and is ready for dissemination at various rare disease conferences and research symposiums. The survey's findings shed light on the demographics of the respondents, highlighting a majority of females primarily from the US, aged between 45 and 65, with over 78% indicating symptom onset in adulthood or early adulthood. Notably, the survey uncovered a distinct correlation with difficulty sitting, suggesting its potential as a unique marker for Arachnoiditis diagnosis. This promising correlation encourages further exploration and validation within the field. The poster abstract has been submitted to the Cambridge UK Raresummit23 and another conference in Brussels, Belgium, with hopes to present it at other important medical conferences in the future. This broader exposure increases the chances that researchers will be willing to delve into Arachnoiditis research, benefiting the community.
