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?

Multimedia
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

Publications 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 Tech 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
Multimedia August 24, 2022
Be Yourself and Don’t Do It Alone
Raphaël G. Ognar joined the latest episode of “Conversations Life Science Leaders Aren't Having” to talk about ensuring patient’s well-being while also making life better for(...)
Life Sciences Patient Centricity
Events August 23, 2022
MedtechVision 2022
Join us at the MedtechWomen MedtechVision Conference, where we will be presenting a state of the Medtech Industry Report with an overview of the innovation and advancement and much more.
Diagnotics MedTech Patient Centricity
News June 17, 2022
Music Beats Cancer Hosts Reception at BIO International Convention in San Diego
Music Beats Cancer hosted a reception fostering a networking community for innovators working on promising solutions for cancer.
Crowdfunding Patient Centricity Research & Development
Welcome to Alira Health. This site is best viewed in Chrome, Microsoft Edge, or Firefox.