Attendance at Health Professional Meetings. Bobby Jones CSF will be attending and participating in at least 3 professional meetings this month to bring the patient voice to the national stage. We will be participating in a meeting with the FDA concerning Ehlers-Danlos syndrome, attending and participating in the 2023 American Public Health Association meeting and participating in and hosting satellite meetings at the 2023 annual meeting of the AANS/CNS Joint Section on Pediatric Neurosurgery. We are grateful we are able to continue to bring the patient voice to the national professional world and keep medical and health sciences patient-centered to improve the experiences of families dealing with Chiari, syringomyelia and related disorders.

Chiari Surgical Success Scale. We are continuing to enroll and collect data for the CSSS study. We have over 100 patients enrolled as of November 1st!

International Patient Registry. We are always enrolling and looking to expand the international patient registry for patients living with Chiari malformation, syringomyelia and related disorders. Please consider completing the 5mm Rule survey and the Patient Satisfaction survey, as we intend to close these surveys at the end of this year and complete our analysis! Each survey only takes 1 minute to complete!

Chiari Clinical Guidelines. The goal of neurosurgical guidelines is to provide guidance on what should be the standard-of-care in Chiari neurosurgical care, based on what is already known in the medical literature. For instance, in terms of diagnosis, the guidelines indicate what radiological images and measurements are most helpful… as well as identifying other clinical tests that may be helpful in appropriate diagnosis— such as sleep studies. The results of this work and the guidelines themselves were published in the journal Neurosurgery here, here and here! We will post more about the guidelines all month!

Chiari Practice Parameters. Unfortunately, what became very clear during the guidelines was just how poor the quality of evidence is in the existing medical literature. The final guidelines developed are not strong in their recommendations… So, to offer better guidance in the meantime (while stronger evidence can be generated by projects like the CSSS) we are working with the Congress of Neurological Surgeons to develop something called practice parameters that can go further than the Guidelines are able to by including expert opinions. We just closed the initial survey and we are planning to host the first meeting of this workgroup again in early 2024 with Dr. David Bauer, new SEA Board Member and surgeon at Texas Children’s.