There are always studies ongoing concerning Chiari, syringomyelia and related disorders— some funded by BJCSF, some not. We will do our best to keep you informed of any research that we know of, regardless of its original funding source.
This webpage will continue to be updated through December 2023. Please check back and see all the updates!
Below are some of the ongoing studies the Bobby Jones Chiari & Syringomyelia Foundation is currenlty funding. This is not an exhaustive list and will be updated in early 2024!
This is a first-of-its-kind multi-institutional prospective cohort study with a primary aim to develop and internally validate a Chiari Surgical Success Scale (CSSS), a prognostic model capable of identifying the probability that certain clinical and radiologic variables will predict a favorable response to surgery, defined by two simple outcomes questions, in patients with Chiari malformation. BJCSF is directly involved in the study, having voting rights on the Executive Committee and acting as the Data Monitor for the project.
The AANS/CNS Joint Section on Pediatric Neurosurgery is awarded at the group’s annual conference to the best abstract or presentation related to Chiari malformation, syringomyelia or related disorders. This award is presented annually to a single researcher whose work, according to his or her peers, exemplifies excellence in the study and understanding of these disorders. The goal of this ongoing project is to promote interest in the study of Chiari and syringomyelia amongst younger neurosurgeons and researchers-in-training. Involving new researchers leads to a higher likelihood of future breakthroughs!
Previous Awardees: Vijay Ravindra, MD (2020), Syed H.A. Akbari, MD (2021), Rachael Han, medical student PGY2 (2022). The 2023 awardee will be announced in December!
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 on imaging, symptoms and surgical interventions.
Craniocervical instability (CCI) is a contentious issue in medicine. There are no well-established criteria to diagnose the pathology. Instead, it is a diagnosis made by clinicians based largely on opinion, since the medical evidence does not have high-quality data. We have begun a Delphi-process to come to consensus on diagnosis and treatment. We are including clinicians on all sides of this controversy as to what “qualifies” as CCI. The goal is to identify objective radiographic and clinical signs that may better indicate surgery. The initial group gathered to discuss this pointed out that pediatric and adult patients are very different, so we hope to come to consensus in both pediatric and adult specialties.
The next steps, then, will be to take those consensus definitions and study current and potential treatment options available. The overall goal is to improve the quality-of-life for families around the world who currently have no clinical guidance for their treatment.
New Surveys Now Available! This is the only international registry of patients and caregivers impacted by Chiari malformation, syringomyelia and related disorders of its kind. Patients and caregivers are able to provide subjective data via cross-sectional surveys as well as objective data by linking their patient portals and/or uploading genetics results from lab testing or commercially-available direct-to-consumer kits like 23&Me. The registry is constantly evolving, opening and closing surveys and studies as needed. It is the goal to create a large repository of research-engaged patients and caregivers to continually advance research.
The Think Tank meeting takes place every year and brings together the leading physicians, scientists and leaders in the Chiari, syringomyelia and related disorder community. New research findings and other practical presentations are provided to those in attendance and discussions are meant to improve the overall patient care for those impacted by Chiari, syringomyelia and related disorders.
The next Think Tank will take place in Chicago, Illinois in May 2024.
Each year, BJCSF hosts its annual Research Colloquium ahead of the annual meeting of the Congress of Neurological Surgeons. The purpose of the meeting is to disseminate recently published research about Chiari, syringomyelia and related disorders and to discuss potential clinical implications for pediatric and adult patients and the professionals who treat them.
The next Colloquium will take place in Houston, Texas in October 2024.
This biennial conference brings together scientists, engineers, clinicians and mathematicians from around the world to discuss the underlying mechanisms that cause disorders of CSF flow, such as syringomyelia and Chiari malformation. Participants discuss their own research and bounce ideas off one another to better comprehend these poorly understood pathophysiology of CSF disorders.
The meeting alternates between the United States and an international partner every four years. The next Hydrodynamics Symposium will take place in Sydney, Australia in 2024.
Bobby Jones CSF has set aside a small amount of research funding to be distributed in the 2024 calendar year, awarding excellence in research related to Chiari malformation, syringomyelia and related disorders.
The goal of this award is to incentivize the completion of new, innovative studies in the fields of Chiari, syringomyelia and related disorders outside of the organization. We hope to inspire young researchers to take a closer look at these conditions– the more people we have looking at these issues, the better! More research by new and seasoned investigators alike will help spark new breakthroughs that bring us that much closer to a cure.
The first set of Common Data Elements (CDEs) for CM1 was developed in partnership with the Bobby Jones Chiari & Syringomyelia Foundation in 2016. The purpose of the Chiari I Malformation Common Data Elements (CDEs) is to facilitate research by providing a standard definition for common, previously used research variables so that they may be used in a more uniform fashion across the available literature. The listing of Common Data Element and Instrument definitions and tools is not intended to limit the consideration of any other variables in the investigation of Chiari I Malformation, but merely to standardize the use of frequently observed variables, where possible. It is recognized, for example, that other metrics, especially those involving the characterization of soft tissue and CSF volume and shape, or those involving dynamic physiological measures, are likely important to future Chiari investigation and perhaps, ultimately, its evaluation and treatment. These metrics have not yet been included in this iteration of the Chiari I Malformation CDEs because there are no current standardization methods available. It is our hope that these elements may be part of future versions of the CDEs to further advance the literature. Finally, we should be mindful that it is not the purpose of these CDEs to define Chiari I Malformation itself or to guide surgical treatment; these CDEs are a tool for research purposes. Annually, these CDEs are updated and reviewed. In 2022, a “package” was submitted for inclusion of tethered cord syndrome CDEs as a co-morbid disorder.
Bobby Jones CSF funded a project at Georgia Tech to develop a golf car for children with differing levels of paralysis and/or disability, with assistance from E-Z-GO and Jones Global Sports. The goal of this project is to make a light-weight, adaptive, modular prototype that will allow children with differing levels of paralysis to lead an active lifestyle, improving their overall quality of life.
Effect of Craniectomy on Syringomyelia Studied in an Experimental Model
Ryan Hess, MD | Jacobs School of Medicine & Biomedical Sciences at SUNY University at Buffalo
Mapping Perivascular Spaces Toward Improved CSF Flow in the Spinal Cord
Dr. Malisa Sarntinoranont | University of Florida
Automated Posterior Cranial Fossa Volumetry by MRI: Applications to Chiari Malformation Type I
Ahmet M. Bagci, PhD | University of Miami
Development of a Numerical Model of Spinal CSF Dynamics
Christopher D. Bertram, PhD | University of Bristol
Genetic Dissection of Chiari Type I Malformation
Christina A. Markunas, PhD-Candidate (Christina has since finished her PhD) | Duke University
Chiari Fellowship at the Duke Center for Human Genetics
We will continue to update this section of the website over early 2024. A lot is happening in the study of Chiari, syringomyelia and related disorders! Please check back soon!
*Participants always being accepted. Learn more andget involved on Wash U’s Chiari research website here.
Bobby Jones CSF SEA Board member Dr. David Limbrick spearheaded a $2.8 million dollar multi-center randomized control trial.
Funded by PCORI, this study looked into the effectiveness of two different techniques for Chiari decompression surgery: posterior decompression with duraplasty, and without! The results of this study are being published soon. Check back in 2024.
*There are other projects that we will be updating here in the coming weeks and months! Check back through early 2024!
Research into Chiari malformation, syringoymelia and related disorders has been overlooked for some time by most investigators other than those who already have a large interest in the subject. Within the past few years, however, Chiari is becoming more and more widely published in the literature and more researchers are having valuable discussions on these disorders.
BJCSF is working to ensure that progress continues to move forward by working on the Common Data Elements and international patient registry to improve research methods, world-wide.
BJCSF is also committed to improving the way researchers and physicians talk to each other. We sponsor several meetings throughout the year to make sure that the conversations that clinicians and researchers have are focused on the whole patient and not their disorders, alone.
It’s important to educate doctors and experts from many different areas of medicine and science.
Watch to learn a bit more about why:
We have been funding and supporting research projects and programs since our initial forming in 2007.
Below are just some of the highlights over the past decade or so. Check back as we update with more recent updates, as well!
Location: Swiss Federal Institute of Technology Zurich (ETH)
Organizers: Dr. Dimons Poulikakos (ETH-Zurich), Dr. Vartan Kurtcuoglu (ETH-Zurich), Dr. Francis Loth (University of Akron)
The first international hydrodynamics engineering symposium held in Switzerland on in July 2011 at the Swiss Federal Institute of Technology in Zurich (ETH).
Engineering/physics focused symposium on the motion of cerebrospinal fluid (CSF). Approximately 20-30 invited speakers from around the world spoke about their research that involves either experiments or computational methods to better understand diseases related to cerebrospinal fluid motion such as hydrocephalus, Chiari malformation, and syringomyelia
Prof. Dr. Dimos Poulikakos received his degree in 1978 in mechanical engineering from the National Technical University, Athens, and studied at the University of Colorado at Boulder where he earned his M.S. in 1980 and his Ph.D. in mechanical engineering in 1983. Before joining ETH Zurich, he was full professor of mechanical engineering at the University of Illinois at Chicago. He received numerous awards like the White House/NSF Presidential Young Investigator Award in 1985 or the James H. Potter Gold Medal in Thermodynamics in 2000. He is the editor in chief of the Journal the Experimental Heat Transfer and an editor of several other journals.
Dr. Vartan Kurtcuoglu obtained his degree in mechanical engineering and his doctorate in biomedical engineering from ETH Zurich. He has extensive experience in the study of cerebrospinal fluid dynamics and blood flow using computational fluid dynamics based on magnetic resonance imaging and computed tomography data. He currently lectures on energy conversion and transport in biological systems and leads a biofluidics research group at ETH Zurich. He is the principal investigator of SmartShunt, an international, interdisciplinary project that aims at developing a feed-back controlled cerebrospinal fluid shunt system for hydrocephalus.
The Duke Center for Human Genetics recruited families who had 2 or more family members with Chiari type I malformations (CMI), with or without syringomyelia. These family members must have been related to each other by blood, and both must have been willing to participate. The work was centered on determining whether or not there was a genetic cause to the development of CMI. Hopefully in the future this will lead to better ways to diagnose and treat CMI.
Participation in the study involved:
For more information, please contact the study coordinator at 1-877-825-1694 or chiari@chg.duhs.duke.edu.
“I am pleased to report that our meeting on July 20, 2010 with Katrina Gwinn, MD, Program Director, Extramural Research Program and Naomi Kleitman, PhD, Program Director, NIH/NINDS Repair & Plasticity Cluster at the National Institute of Health (NIH) was productive. CSF wanted to reach out to Dr. Gwinn who works in the Neurogenetics Cluster as a Program Director at NINDS, and handles a portfolio of diseases and disorders for the NIH/NINDS. Chiari malformation is part of her recently acquired portfolio. This meeting was an opportunity to educate Dr. Gwinn on CSF’s key board members, mission, accomplishments and research goals. The NIH is very interested in working with CSF on a research consensus projects and continued collaboration. Dr. Edward C. Benzel and Dr. John Heiss will help to move this project forward.”
Bobby Jones CSF is proud to say that it has been engaged and has worked with the NINDS/NIH every year since this first note was written in 2010.
