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Why Integrated Registries are Critical for Rare Disease

Learn more in this article from UBC’s Evidence Development team in International Clinical Trials Magazine.
Learn more in this article from UBC's Evidence Development team in International Clinical Trials Magazine.

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

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President & Chief Executive Officer

Bekki Bracken Brown serves as the President and CEO of UBC, guiding the company’s mission and values, including the improvement of access for patients to receive better outcomes. She oversees all aspects of UBC, such as operations, business growth strategy, sales and marketing, and acquisition support.

With over 20 years of industry experience, Ms. Brown brings knowledge from a successful career in senior management from her tenure at Quintiles, INC Research, and, most recently, with Syneos Health. She’s been a member of the North Carolina BIO Board of Directors since 2019. She is also a member of the Healthcare Businesswomen’s Association — Southeast Chapter and CHIEF, an organization that supports women executive leaders. Ms. Brown earned her bachelor’s degree at Duke University.