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.

Wednesday, July 3, 2013

Understanding Rare Disease Registries Webinar

Global Genes | RARE Project and a host of partners are proud to continue our RARE Webinar Series, a series of educational webcasts this year on relevant and timely topics that should be of interest to the RARE community.   

Our upcoming webinar will focus on Understanding Rare Disease Registries and will feature panelists coming at this topic from a different angle.     

Gain a clear understanding of design, implementation, and resource considerations that are the foundations of a successful registry in this two-part webinar series.
Part 1, July 31, 2013
11:00 am Pacific Time 

Register today - space is limited!   Part one of this series will cover the different types of registries and features of a robust patient registry, as well as options currently available for building a new registry or enhancing an existing one. 

The expert panelists will discuss resources for questionnaire design, collecting natural history information, considerations for drug development and the FDA, and informed consent and data sharing. 

Panelists for Part 1 include:  Dr. Steve Groft, Director of the Office of Rare Diseases (ORD) Dr. Marshall Summar, Division Chief of Center for Genetic Medicine Research (CGMR) Moderator:  Shira Kramer, President, GlobalEpi Research 

I would encourage you to register and join the discussion.  I would also ask that you send this email along to your community and rare friends that might also be interested in the topic. 

Special thank you to our content partner, GlobalEpi Research, for their help in coordinating this important discussion.


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