Asking the Right Questions: How the Patient Perspective Impacts the Success of Rare Disease Studies

Life Sciences, Clinical Trials, Patient Recruitment & Retention,
  • Wednesday, June 26, 2024

Discover an informative webinar that will explore effective strategies for integrating patient perspectives and priorities into rare disease studies to increase engagement, accelerate enrollment and optimize study success.

Rare diseases affect a small percentage of the population but have a profound impact on the lives of both patients and their loved ones. For most patients with rare diseases, the journey to diagnosis is long and the options for treatment are limited.

While clinical trials offer hope for addressing the significant unmet need in rare diseases, rare disease studies must be developed with the patient perspective in mind. Asking patients and caregivers about the challenges they face and the expectations they have of study participation is critical for designing and executing successful clinical trials.

In this webinar, the attendees will gain insights into crucial concepts for rare disease clinical research, including the unique challenges it presents. The expert speakers will focus on methods for building relationships with patients early in the development process, strategies for seeking and incorporating patient feedback to create relevant and feasible study designs and options for enhancing the overall experience of study participation.

Register for this webinar to learn how integrating patient perspectives into rare disease studies can enhance engagement, accelerate enrollment and optimize success.


Kris O’Brien, Premier Research

Kris O’Brien, Executive Director Program Strategy, Rare and Pediatric Disease, Premier Research

Kris has been in the clinical research industry for over 38 years and has functioned in a variety of roles during that time. Her experience in operations enables her to provide well-rounded expertise in all areas of study execution which is supported by subject matter knowledge in a multitude of therapeutic areas with a depth of experience in both rare and pediatric diseases.

Kris’ past roles range from Study Coordinator at the site level to roles at CROs and pharmaceutical companies, such as: Data Editor, CRA, Project Manager, Director of Training, Client Manager, Head of Project Management, Project Director, VP of Operations and VP of Client Strategy and Development. With these roles, she has gained real-world experience that allows her to understand practical application of strategy and what is likely to be successful when applied. This type of knowledge adds real value to our customers when executing study designs.

Kris currently supports new and existing clients with strategic planning, coordination, and subject matter expertise for rare, ultra-rare and pediatric indications. She also advises, directs, and provides input on strategy for project execution including regulatory, medical, scientific, and operational knowledge.

Message Presenter

Who Should Attend?

This webinar will benefit Managers and above at biotech and specialty pharma companies with job functions including, but not limited, to:

  • Clinical operations
  • Medical affairs
  • Project management
  • Regulatory affairs

What You Will Learn

Attendees will learn about:

  • Unique challenges of rare disease clinical research
  • Methods for building relationships with patients early in development
  • Approaches for seeking and incorporating patient feedback to design relevant and feasible study designs
  • Options for enhancing the experience of study participation

Xtalks Partner

Premier Research

Premier Research, a clinical research company, is dedicated to helping biotech, specialty pharma, and device innovators transform life-changing ideas and breakthrough science into new medical treatments. As a global company, Premier specializes in the use of innovative technologies for smart study design and trial management to deliver clean, conclusive data to sponsors. Whether it’s developing product lifecycle strategies, reducing clinical development cycle times, securing access to patients, navigating global regulations, maximizing the impact of limited rare disease data, or providing expertise in specific therapeutic areas, Premier is committed to helping its customers answer the unmet needs of patients across a broad range of medical conditions. Visit

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