Cyclodextrin Update – NPC Community Wide Conference Call Friday, May 3rd, 2013
Hello NPC Families and Friends, April 30th, 2013
The National Niemann-Pick Disease Foundation has been informed by Dr. Denny Porter, principal investigator of the NIH/TRND Cyclodextrin Clinical trial that the NIH team has decided to pause the Cyclodextrin clinical trial ~ currently being held at the NIH in Bethesda, Maryland, USA. The NNPDF will host a NPC community-wide conference call, with Dr. Denny Porter and Dr. Dan Ory as the key speakers, to discuss this and other updates pertaining to the trial.
The NPC Community-Wide call will be held on ~ Friday, May 3rd, 2013 at:
8:30 am PDT; 10:30 am CDT; 11:30 am EDT; 12:30 pm in Argentina and Brazil; 6:30 pm Israel
4:30 pm in UK; 5:30 pm in France, Germany, Holland, Italy, Poland, Spain, Switzerland;
The following items will be addressed during the call:
· Overview of the issues leading up to the decision to place the current trial into a pause status
· The plan to continue the NIH Phase 1 clinical trial to evaluate the safety of Cyclodextrin in NPC1
· The NIH/TRND Cyclodextrin Clinical Trial team will continue to send additional follow-up correspondence to the NPC community world-wide regarding the protocol and status of same
· Questions pertaining to the information presented during the call may be e-mailed directly to members of the NIH/TRND team and they will forward along to Drs. Ory and Porter for a response. firstname.lastname@example.org
· This teleconference will be limited in time and recorded. A written transcript of the call will be posted and made available to the NPC community.
· Questions during the call on Friday or resulting from the call can be emailed to: email@example.com will be responded to either on the call, if there is time, or after the call by direct e-mail. In addition, we will create a “Q & A” document resulting from these inquiries which will also be posted and made available to the NPC community.
Listed below are the dial-in conference call instructions:
Toll free/Canada and the United States: 1-800-615-2820
Toll (International Participants): 1-719-867-0495*
Participant Passcode: 187670#
*Additional International Toll Free lines are being established and will be posted here prior to Friday’s call.
If you have any questions pertaining to this notification ~ please feel free to e-mail the NNPDF Central Offices at: firstname.lastname@example.org.
Thank you for your kind consideration to this matter.
Nadine M. Hill
NNPDF Executive Director
National Niemann-Pick Disease Foundation