Bobby Jones CSF will provide brief summaries of recently published papers related to Chiari malformation, syringomyelia, and related disorders here.
There are always studies ongoing concerning Chiari, syringomyelia and related disorders— some funded by CSF, some not. We will do our best to keep you informed of any research that we know of, regardless of its original funding source. (below)
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
THE IMPACT OF THE ORPHAN DRUG ACT ACCORDING TO PATIENT PERSPECTIVE
AP Research student, Tabina Hassan, at Seven Lakes High School in Katy, Texas is currently researching patient perspectives on the Orphan Drug Act of 1983 in order to understand whether this act is successful according to its target group.
Washington University School of Medicine Genetics Study
**PARTICIPANTS NEEDED: GET INVOLVED NOW
Posterior-Fossa Decompression Trial – $2.8 Million RCT Funded by PCORI
Posterior Fossa Decompression: To Duraplasty or Not To Duraplasty?
Bobby Jones CSF SEA Board member Dr. David Limbrick is spearheading a multi-center study funded by PCORI to look into the effectiveness of two different techniques for Chiari decompression surgery.
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.
CSF is working to ensure that progress continues to move forward by working on the Common Data Elements and international patient registry project to improve research methods, world-wide.
CSF 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.
Check out why we think it’s important to educate doctors and experts from many different fields of medicine:
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 TWO 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 firstname.lastname@example.org.
“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.