Panel Discussion: Technology in Rare Disease Trials: Best Practices for Patient Centricity

Watch Now On-Demand
Rare Diseases have a significant medical footprint in society, and while most rare diseases might only affect a few hundreds to thousands of people worldwide, they are collectively common, affecting an estimated 25 million to 30 million people in the United States alone.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.

Watch the panel discussion to 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?

Published on:
June 1, 2022
Meet the Speakers

Grace Almendras-Castillo

SVP, Digital Consumer Health, Alira Health and Founder, Self Care Catalysts, an Alira Health Company

Jared Adams

Chief Product and Health Solutions Officer, Self Care Catalysts, an Alira Health Company
Kumara Prasad Palanivel

Kumara Palanivel

Director, Digital Medical Strategy, Alira Health

Renee Willmon

Senior Director, Evidence and Outcomes, Self Care Catalysts, an Alira Health Company

Related news

News January 23, 2023
TerSera Therapeutics to sponsor “NET Cancer Health Storylines” by Alira Health and Carcinoid Cancer Foundation to support patients suffering from Carcinoid Syndrome Diarrhea
We are pleased to announce TerSera Therapeutics’ sponsorship with the Carcinoid Cancer Foundation (CCF) and Alira Health to expand and optimize a holistic patient journey digital(...)
Digital Health Digital Therapeutics Patient Centricity
News January 9, 2023
Alira Health Accelerates Global Growth and Secures Additional $58M Capital Injection
Alira Health, a global healthcare advisory, clinical research and technology company, announced it secured an additional US$58 million in capital funding, further strengthening its(...)
Alira Health Capital Injection Patient Centricity
Blog January 3, 2023
The Future of Healthcare: Patient-Owned Data
A revolution in patient data is upon us at long last...The future we envisioned then is now coming to fruition. This major paradigm shift puts data in the hands of patients, and we are ready for it.
Patient Advocacy Patient Centricity Patient Engagement
Blog November 3, 2022
Our Philosophy, Growth, and Future: An Interview with Gabriele Brambilla
In 2015, Alira Health was less than 30 people. Now, we are over 650 all across the world. We sat down with Gabrielle Brambilla, CEO of Alira Health, to find out more about the plan(...)
Innovation Patient Centricity
Events September 20, 2022
Outsourcing in Clinical Trials New England 2022
We are excited to share that we will be attending and exhibiting at Outsourcing in Clinical Trials New England in Boston.
Clinical Operations Clinical Trials Healthcare Technology Hybrid Clinical Trials Rare Disease Trials
Multimedia September 8, 2022
HealthBiz Podcast: Interview with Gabriele Brambilla
Gabriele Brambilla, CEO of Alira Health, has joined the HealthBiz podcast to discuss how Alira Health strives to achieve its mission of humanizing healthcare, the importance of seeing(...)
Life Sciences Patient Centricity Product Development
Events August 29, 2022
Mobile Technology in Clinical Trials 2022
Join us at Mobile Tech in Clinical Trials, an event focusing on helping R&D operation executives support more patients remotely, including a demo of Health Storyline, our patient-driven(...)
Clinical Trials Mobile Tech Patient Centricity
Welcome to Alira Health. This site is best viewed in Chrome, Microsoft Edge, or Firefox.