STATE OF CHIARI, SYRINGOMYELIA AND RELATED DISORDER RESEARCH
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 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:
Chiari Research: Up-to-the-Minute
One of CSF's SEA Board members is involved in the first multi-center study to look into the effectiveness of two different techniques for Chiari decompression surgery. You can learn more about this project on the website for the Patient-Centered Outcomes Research Initiative. And stay tuned for more interesting updates from the researchers-- they have promised that this project will involve A LOT of patient input every step of the way!
CSF'S RECENT INVOLVEMENT IN RESEARCH
First Symposium Recap
July 8 and 9, 2011
Swiss Federal Institute of Technology Zurich (ETH)
Dr. Dimos Poulikakos (ETH)
Dr. Vartan Kurtcuoglu (ETH)
Dr. Frank Loth (University of Akron)
First international hydrodynamics engineering symposium held in Switzerland on July 1st and 2nd, 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
About Dr. Dimos Poulikakos: 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.
About Dr. Kurtcuoglu: 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.
CSF IN WASHINGTON. Dorothy Poppe, Executive Director of the Chiari & Syringomyelia Foundation, returned to Washington DC to continue talks with the NIH.
We are 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. Check back often, as more information on this project will be detailed in the coming months.
DUKE CENTER FOR HUMAN GENETICS STUDY. The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations (CMI), with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. Our work is centered on determining whether or not there is 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 involves:
- Read and sign consent forms
- Provide a blood sample from family members both with and without CMI
- Family history telephone interview
- Complete a medical history questionnaire
- Review medical records and MRIs to confirm the diagnosis of CMI/S
For more information or to enroll in the study, please contact the study coordinator at 1-877-825-1694 or firstname.lastname@example.org.
INTERESTING PAPERS FOR RESEARCHERS (CSF AND NON-CSF FUNDED)