International Patient Registry. We still need a little more information to complete an analysis of the 5mm Rule and patient surgical outcomes in Chiari treatment. We need to have a few more people complete both the Impact of the 5mm Rule and the Standard of Care & Satisfaction surveys in the international registry. You can complete both surveys in under 5 minutes!

Got a question? Contact Kaitlyn at kesposito@bobbyjonecsf.org with any questions about our international patient registry. You can also contact Kaitlyn to tell us more about what you want us to study using the registry in the future. Thank you for being key to a cure!

External Research Meetings & Events. We will be participating in the 2023 Patient Centered Outcomes Research Institute (PCORI) annual meeting on October 4-5th to stay up-to-date on patient-centered research updates as well as plan future abstract submissions and studies. We also continue to lift up other like-minded organizations and actively contribute the Chiari and syringomyelia perspective to their missions. To accomplish this, we will also be participating in research meetings and events to address issues such as spinal cord injury, paralysis, and connective tissue disorders with the Ehlers-Danlos Society and The Miami Project to Cure Paralysis.

Chiari Surgical Success Scale Update. There are now 10 enrolling sites in this study, with more sites coming on in the beginning of 2024. Over 670 patients have been screened for this groundbreaking study, over 100 are already enrolled and 16 adult and pediatric patients have already finished their data collection! To all the patients, parents, clinicians and researchers who are involved in this work: we are so thankful for your dedication to find answers for patients before they ever set foot into an OR!