Responsible Data Return in Rare Disease Clinical Trials: What Sponsors Need to Know

February 26th, 2026
11 a.m. EST

Returning patient data in clinical trials is becoming recognized as an essential component of patient-centric research. In rare disease studies, it is particularly important. Patients with rare diseases often have limited access to information about their own health and the progression of their condition. When implemented responsibly, returning results can empower patients, promote transparency, and enhance continuity of care. At the same time, sponsors must navigate complex considerations related to privacy, informed consent, data interpretation, and long-term accessibility. 

In this webinar, our expert speakers will discuss operational, ethical, and regulatory factors that shape, and sometimes drive, effective data-return strategies in rare disease trials. We will cover participant rights, informed consent integration, and approaches for protecting privacy and data integrity. Attendees will also learn tips for presenting results clearly to prevent misinterpretation and support patient understanding, along with strategies for building flexibility into data-return processes to accommodate evolving patient preferences. 

By the end of the session, attendees will have a better understanding of the complex considerations surrounding responsibly returning individual patient data to strengthen patient engagement while meeting ethical and regulatory expectations. 

Attendees will gain insights into: 

• The importance of returning patient data to rare disease clinical trial participants  

• Regulatory expectations and ethical considerations for returning patient data 

• Operational strategies conducive to responsible data return in rare disease clinical trials 

Registration Coming Soon  

Speakers:

Angi Robinson – Senior Vice President, Specialty Areas

Victoria Watts – Vice President, Compliance Officer