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.
NINDS Notes is a newsletter consisting of the latest funding news from NINDS, summaries of current funding announcements, and requests for volunteers for clinical trials. The newsletter is published three times a year by the NINDS Office of Communications and Public Liaison.
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? is a US national study sponsored and funded by the National Institute of Health. The purpose of this study is 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 will be collected through an IRB-approved mailed survey. The survey will present 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 is followed by 2 questions. The entire survey takes about 15 minutes to complete.
The first step is to provide your contact information HERE so the survey can be mailed to you at the address you provide. All information that you do provide will remain confidential and your survey answers will not be connected to your name.
Thanks for helping with this very important survey. This research is an important initiative to improve the health of so many!