Registry Update:
We continue to make steady progress toward reopening the Arachnoiditis International Patient Registry on our new platform, DigitalCabinet.
Our team has completed significant work behind the scenes, including preparing the registry infrastructure, developing the initial survey instruments, and collaborating with international researchers, clinicians, and patient advocates to ensure the registry will provide meaningful, high-quality data for future research.
The registry remains in the final stages of the ethics review (IRB) process. Once approval is received, we will complete the remaining preparations and announce the official reopening.
This registry represents a major step forward in advancing Arachnoiditis research. By collecting real-world patient data, we aim to deepen our understanding of the disease, identify trends, support future studies, and help accelerate the development of improved treatments and care.
Thank you for your patience and continued support as we work to relaunch this important global research initiative. We look forward to sharing more updates as we move closer to reopening.
Learn About Patient Registries
As we prepare to relaunch the Arachnoiditis International Patient Registry, we invite you to watch our introductory video to learn why patient registries are essential to advancing research.
Although the registry is moving to a new platform, the purpose remains the same—every participant helps researchers better understand Arachnoiditis and move us closer to improved treatments and care.
We'll share updated instructional materials when the new registry launches. Until then, this video provides an excellent introduction to the importance of patient participation.
2023 POSTER ABSTRACT
This poster abstract is based on data contributed by 1,250 participants who shared their experiences through an ACMCRN survey conducted in collaboration with StuffThatWorks. The findings highlight important symptom patterns and patient-reported outcomes that help advance our understanding of Arachnoiditis. Presented at multiple international rare disease conferences, this work continues to raise awareness and encourage future research collaborations.
