registries

Implementing Rare Disease Registries: Unique Challenges & Proactive Solutions

In Advocacy, Regulation & Government by Freya SmaleLeave a Comment

registriesRonald A. Christensen, M.D., Chief Medical Officer, Mapi group joined us at the 4th Annual World Orphan Drug Congress USA to speak about “Implementing Rare Disease Registries:Unique Challenges & Proactive Solutions.”

Download this presentation to find out more about the challenges and solutions of rare disease registries such as:

  • Flexible Study Design
  • Diverse Disease Spectrum/Representativeness of Data
  • Investigator Recruitment
  • Regulatory & Ethics Considerations
  • Patient Identification & Recruitment
  • Patient Retention
  • Direct-to-Patient Contact

…and much more!

Get your copy here!

If you are interested in finding out more about the implementation of rare disease registries, then join us at the 5th Annual World Orphan Drug Congress USA in Washington D.C. in April 2015.

WODC 840X120

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