A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, October 25, 2013

Type C Clinical Update

October is Niemann Pick Disease Awareness Month

The information below came from the NNPDF website:

We are happy to share with the NPD community that the NIH/TRND Cyclodextrin in NPC1 trial has been restarted.  Despite the Federal Government shutdown from October 1-16, our team was able to meet our projected re-start date in late September, and to date have coordinated three successful admissions on this protocol.  We are grateful for the patience of the participating families, and for the dedication of the NIH Clinical Center staff, which allowed us to avoid any major interruptions in the admission schedule.

We have scheduled three additional patients to start before the end of 2013. The remaining open slots will continue to be scheduled on a rolling basis as we get closer to the start dates in early 2014.  We will be re-contacting families who had been screened previously to make sure they are still eligible before we schedule the remaining slots.  If any families with children ages 2-25 are interested in more information about the trial or would like a member of our team to screen their child to see if they are eligible, they can contact Nicole (Yanjanin) Farhat at (301) 594-1765


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