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Posted by on May 1, 2013 in Foundation NewsLine |

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.  nichdnpc1@mail.nih.gov
·         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: nichdnpc1@mail.nih.govand 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:  nnpdf@nnpdf.org.
Thank you for your kind consideration to this matter.
Nadine M. Hill
NNPDF Executive Director
National Niemann-Pick Disease Foundation
E-mail:  nhill@nnpdf.org
Phone:  920-563-0930