Feb 21, 2023
Scott Gray is the President and CEO of Clincierge and supporting the activities related to the observation of Rare Disease Day on February 28. Clincierge is focused on coordinating logistical, financial, caregiving, and translation services to facilitate participation in clinical trials by patients with rare diseases. With a personalized, local approach, they support sponsors of research in the recruitment and retention of patients by removing obstacles and reducing stress.
Scott explains, "The intent is to provide an energy and a focal point that enables rare disease advocacy work to progress on the local, national, and international levels. The intent of improving access to treatment and medical representation for the many individuals who struggle with a rare disease and include their families who support and care for them. Since it was created in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse but truly united in its purpose of expanding access for these unique patients."
"From what we've observed in the rare disease space, there hasn't been a great effect by technology. Monitoring can happen, but a lot of the observational reviews that have to happen during the visit are only able to happen with going to the site. During the pandemic, as you mentioned, we were asked in some instances to move the healthcare provider to the home of the rare disease patient so that they didn't have to travel, especially if it was a patient who was immunocompromised. And if that wasn't possible, there were also instances where the sponsor budgeted for private jet travel so that an immunocompromised patient could visit the site."
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