Posted August 21, 2008
- Check out the Petition to Cure SMA
- Sponsored by Families of SMA, the SMA Foundation, Fight SMA and the Muscular Dystrophy Association
Posted May 6, 2008
- Recently Published: Family Guide to the Standard of Care Consensus
- Prepared by the Patient Advisory Group of the International Coordinating Committee for SMA Clinical Trials
- Breaks information down into the same 5 categories as the original statement:
- 1. Confirming the diagnosis of SMA
- 2. Managing breathing
- 3. Managing eating and nutrition
- 4. Managing movement and daily activities
- 5. Preparing for illness
- Emphasizes key points and summarizes recommendations for the family into bullet points at the bottom of each section
Posted April 9, 2008
- Clinical Trials Update
- Enrollment in the NPTUNE Sodium Phenylbutyrate trials has finally begun again. There is a limited number of patients that may be enrolled at a given time across all sites, but if you would like more information about participation please check out the Clinical Trials page and Contact Us if you are interested.
- The Type II/III Hydroxyurea Study has finished data collection and we are currently working on the analysis. While we are not really able to share any of the results before they are published, we will be sure to keep everyone as up-to-date as possible as to when that will happen.
Posted December 14, 2007
With the introduction of the "News" page, we'll highlight some of the recent activities at Stanford and in the SMA world.
- Publication of Dr. Wang's Standard of Care Committee's Consensus Statement in the November 2007 Issue of The Journal of Child Neurology
- More information can be found on the SMA at Stanford: Standard of Care page
- Stanford has launched its new Clinical Trials Database
- Both linked with and based on ClinicalTrials.gov
- Clinical Trials Update
- Enrollment in the Nptune trials is no longer "suspended," but has still not re-opened yet here at Stanford. (Confusing, I know, but we'll be sure to provide updates whenever possible. The setup process prior to enrolling patients in a clinical trial is a rigorous one- which on the whole is a very good thing.)
- The Type II/III Hydroxyurea Study is nearing completion. Hopefully the analysis of the first six "double blind" months will be ready to get out there soon.
- The Type I trial has reached full enrollment.
- Preliminary data from Dr. Wang's Hydroxyurea studies was recently highlighted in a summary of SMA Clinical Trials by Neurologists at Children's Hospital Boston and Harvard Medical School
- The article, by Basil T. Darras and Peter B. Kang was published in Current Opinion in Pediatrics
and was entitled "Clinical trials in spinal muscular atrophy." Clicking the link in the text will take you directly to the article
abstract
