Early and Often: Reimagining patient community engagement to improve clinical trials feasibility

The Global Genes Corporate Alliance has developed a new white paper that shows the transformative role of patient advocacy organizations in rare disease drug development.

Clinical trial feasibility studies are critical to the drug development process. Yet traditional approaches—relying solely on quantitative data and past research—often fall short when applied to rare disease populations. This report highlights how early and ongoing engagement with patient advocacy leaders and patients is essential to improving trial designs, reducing barriers to participation in studies, and increasing the likelihood of success.

Download the Report Today View The Press Release. Watch the webinar recording with the white paper authors

Key Insights from the Report:

Elevating Feasibility: Engaging patient communities early provides critical insights that reduce enrollment delays and the need for costly protocol amendments..

Qualitative Insights Matter: Understanding the patient experience uncovers barriers, helping drug developers design trials that truly work for rare disease populations.

Accelerating Therapies: Engaging patients early reduces costly delays by improving enrollment and retention, allowing drug developers to get their products to market faster.

Breaking Down Barriers: By understanding the demands on patients and caregivers, trials can address logistical and procedural challenges that deter participation.

Building Trust: Transparent collaboration between industry and patient communities fosters trust, ensuring trials align with patient needs and priorities.

This report underscores a powerful message: The patient community is a source of under-utilized expertise that can better inform discovery and development of rare disease therapies. Whether you’re a patient advocate, caregiver, or industry leader, this resource is a call to action to prioritize patient engagement in rare disease research.

Access the Early and Often to learn how a patient-centered approach can improve recruitment, retention, and trial success while fostering meaningful collaboration between biopharma and advocacy communities.

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