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The Importance of Integrated Registries in Rare Disease Research

Friday, June 10, 2022

UBC recently published an article in International Clinical Trials Magazine on how integrated registries can enhance our understanding and ability to treat rare diseases effectively. UBC’s contributing experts included Annette Stemhagen, Senior Vice President and Chief Scientific Officer; Aaron Berger, Vice President of Real World Evidence; and Irene Cosmatos, Senior Real World Data Epidemiologist.

This article discusses:

  • Why integrating registries is necessary in the rare disease space
  • The key data skills involved in building an integrated registry
  • The technical requirements for building an integrated registry
  • And more

To read the full article, click here.

To learn more about UBC’s observational research experience and capabilities, visit here or get in touch with us.












International Clinical Trials, May 2022, pages 58-60. © Samedan Ltd