Grand Reopening of the ACMCRN International Arachnoiditis Patient Registry
Urgent Notice to All ACMCRN Members
Join Us on Rare Disease Day 2025 – February 28, 7 PM EST
We are thrilled to announce the Grand Reopening of our International Arachnoiditis Patient Registry on Rare Disease Day 2025! After months of dedicated work, collaboration, and overcoming significant challenges, ACMCRN has rebuilt and enhanced our registry to better serve arachnoiditis patients, researchers, and healthcare professionals worldwide.
Why the Registry Matters
The ACMCRN International Arachnoiditis Patient Registry is a secure, confidential database that collects vital information about patients with arachnoiditis. This registry plays a critical role in:
✅ Advancing research – Providing valuable, real-world data to help identify trends, symptoms, and potential treatments.
✅ Supporting medical discoveries – Ensuring our data meets the highest international research standards, allowing it to be used in peer-reviewed studies.
✅ Empowering patients – Giving individuals the ability to participate in studies that could lead to new insights and better care.
What’s New?
We’ve partnered with leading rare disease groups to create a state-of-the-art registry platform that:
🔹 Protects your privacy and data security in compliance with global research and ethical standards.
🔹 Allows patients to choose how they participate in studies while keeping their information confidential.
🔹 Enables direct communication with registrants about new research opportunities and updates.
How to Participate
1️⃣ Join us on Rare Disease Day 2025 at 7 PM EST for a special live event announcing the official launch.
📅 Click Here to Join the Live Zoom Meeting
2️⃣ Register on our new platform (coming soon!) and contribute to groundbreaking research.
3️⃣ Help us sustain the registry – A small donation can ensure the continuation of this vital research tool. Just $10/month from 55 members will fully fund our registry for the year!
💜 Donate to Support the Registry
Be Part of the Future of Arachnoiditis Research
By signing up, you are making a difference. Your participation helps scientists, doctors, and fellow patients get closer to better understanding arachnoiditis and its impact.
📢 Mark your calendar for February 28, 2025 and be part of this historic milestone for our community!
If you would like to be notified when we make changes to the website, or have special events, please hit the SUBSCRIBE button below.
#PatientsHelpingPatients #Arachnoiditis #ACMCRN
Resources
As we prepare for the Grand Reopening of the ACMCRN International Arachnoiditis Patient Registry on Rare Disease Day 2025, 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.
