Panel Discussion: Technology in Rare Disease Trials: Best Practices for Patient Centricity
June 22, 2022 | 4 PM CEST / 10 AM EST
Many of these diseases have a genetic cause, are serious or life-threatening and are hard to diagnose and treat. The U.S. Orphan Drug Act of the U.S. FDA has stimulated industry investment in clinical trials to develop treatments for rare diseases, yet only about 10% of rare diseases have an FDA-approved therapy for their treatment. Rare disease research poses challenges to investigators requiring specific approaches to the design of clinical studies; the discovery, testing, and approval of new treatments, and the training of patients and the medical community to improve access to diagnosis, research and treatments.
In this panel discussion, we sit down with experts in digital health, clinical research and patient engagement to discuss ways in which technology can address the challenges facing clinical development for rare disease.
During this panel discussion you will learn:
- How does technology address challenges in the design and execution of clinical studies?
- What are the impacts of technology and decentralization on the integration of clinical research within the continuum of rare disease treatment, from diagnosis to treatment?
- How are partnerships with patients, caregivers and patient organizations changing the landscape of rare disease trials and registries?
The panel discussion will be followed by a Q&A session.
Meet the Speakers
Grace Almendras-CastilloSVP, Digital Consumer Health, Self Care Catalysts, an Alira Health Company
Jared AdamsChief Product and Health Solutions Officer, Self Care Catalysts, an Alira Health Company
Kumara PalanivelDirector, Digital Medical Strategy, Alira Health
Renee WillmonSenior Director, Evidence and Outcomes, Self Care Catalysts, an Alira Health Company