Important Announcement: Closure of Luna Platform, Host of Our Arachnoiditis Patient Registry
Urgent Notice to All ACMCRN Members
We are reaching out with a crucial update that impacts our Arachnoiditis Patient Registry. We have been informed that Luna, the digital platform hosting our registry, is closing down.
Details of the Closure:
Luna has initiated the shutdown process due to financial constraints and is set to delete all user accounts and data by January 31, 2024. This significant development directly affects our registry and the valuable data you have entrusted to us.
What This Means for Our Registry Members:
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Action Needed to Export Your Data: If you have personal data on Luna that you wish to retain, we recommend exporting it before the January 31 deadline. Luna has provided guidelines on how to do this.
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Security of Your Registry Data: Rest assured, the data within the Arachnoiditis Patient Registry is secure. Under the PEER organization's guidance, we are in the process of transitioning to a new platform to ensure the continued safety and confidentiality of your information.
Stay Informed Through Our Newsletter:
For the latest updates on the transition and notification of our new registry platform, we urge you to subscribe to our Registry Newsletter. This will be the most direct way to receive timely and important information.
Continued Support and Communication:
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Regular Updates: We are committed to keeping you informed through our website, emails, and the Registry Newsletter.
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Data Security Commitment: Ensuring the protection of your data remains our highest priority during this transition.
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Questions and Support: For any inquiries, please reach out to Lori Verton, President, at verton@acmcrn.org.
Our Dedication Amidst Change
While the closure of Luna presents challenges, our commitment to our community and the Arachnoiditis Patient Registry remains steadfast. We are dedicated to managing this transition smoothly and with minimal disruption to our services.
Thank you for your understanding and continued support during this transitional phase and don't forget to subscribe to our newsletter to be notified about the Patient Registry and other important updates.
Resources
Important Note Regarding Our Patient Registry Instructional Video
As we navigate through the transition to a new platform for our Arachnoiditis Patient Registry, we would like to inform our members that we will continue to host the existing instructional video on our website. This decision has been made recognizing the value this video offers in explaining the general workings and benefits of a patient registry.
Why We Are Keeping the Old Video:
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Educational Value: The current video contains essential information that is beneficial for both new and existing members to understand how a registry functions and the importance of their participation.
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Timeless Insights: Despite the upcoming platform change, the principles and objectives outlined in the video remain relevant and provide a solid foundation for understanding the purpose and impact of our registry.
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We believe this video will continue to serve as a valuable resource in educating and engaging our community. Once the new platform is established and operational, we plan to supplement this existing material with updated content that reflects any new features or processes.
We encourage all members, especially those new to the Arachnoiditis Patient Registry, to view this video to gain a deeper understanding of how patient registries play a crucial role in research and advocacy.
Thank you for your ongoing support and engagement with our efforts to advance understanding and treatment of Arachnoiditis.
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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.
