CSF is continuing our dialogue with the NINDS and the NIH. Below are links to NINDS Notes (the NINDS newsletter), NINDS news releases, NINDS funding opportunities, the NIH Public Bulletin, NIH News in Health (the NIH monthly newsletter), and NIH clinical studies on Chiari and syringomyelia.
NIH Chiari Malformation Clinical Studies
NIH Syringomyelia Clinical Studies
NIH News in Health is a monthly newsletter bringing you practical health news and tips based on recent research. It is fully reproducible and available online (and available in hard copy format).
Gene Talk: What Do We Expect From Families and their Doctors? was a US national study sponsored and funded by the National Institute of Health. The purpose of this study was to collect thoughts, opinions, and beliefs from patients and providers about who has responsibility for sharing genetic risk information within families, and when it is morally acceptable not to share information. The investigators believe that the opinions of people like you, who actually live with these situations, are key to their research. In addition to information gathered from patients and their families, information has been collected from experienced health care professionals, medical doctors, and health care consumers inexperienced in genetic illnesses.
The data were collected through an IRB-approved mailed survey. The survey presented 12 short stories about different ways providers and patients might react to situations that might involve sharing genetic information with family members. Each brief story, followed by 2 questions. The entire survey took about 15 minutes to complete. All information provided by patients and caregivers remained confidential and survey answers were not identifiable by name.
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.
“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.”
