Making Decentralized Trials Common Place for Rare Disease Patients

13th Oct 2021
Making DCT commonplace for Rare Disease patients

Decentralized clinical trials have proven to allow continued recruitment and retention of patients, keeping trials and patient’s wellbeing on track, but what about keeping daily life on track for a patient and their family?

For rare disease patients, a clinical trial may be the important next step in their healthcare journey, an important key that unlocks the next door of treatment, so it’s imperative for those trial schedules to be flexible and meet the life needs of the patient. We know that a patient is more than their health condition — they’re parents, children, they go to school and work, they have a life outside of clinical research, and trial designs don’t always consider that.

MRN has spent close to two decades advocating for a decentralized, patient-focused approach to clinical trials, bringing trial visits to the patient in their own community. While the industry in recent years has discussed various decentralized, patient-centric strategies, COVID-19 brought their implementation to the very forefront of clinical trial development. As an industry, we saw sites close and studies lose their trial patients. Because of this, eyes have been opened to all of the possibilities decentralized solutions can bring to a trial, but with implementation comes a learning curve.

During this webinar, featured speakers will give you insights into their experience running decentralized trials so you can be ahead of the curve. They will discuss when decentralized trial visits will work, how to make them work, the impact on rare disease patients and families and how you can support them through decentralizing trials with a look into the journey of a family navigating life with a rare disease.

What you will learn:

  • Real-life considerations for patients and families that need to be addressed when evaluating decentralized solutions?
  • How do you achieve complete, quality data and maintain high quality of life for patients and families?
  • Are decentralized solutions right for your trial and patient population? If so, how do you make decentralized solutions successful for your clinical trial?


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