A high level of communication and personalized support for patients and caregivers can help overcome the often enormous challenges of patient recruitment and retention in orphan and rare disease clinical trials, according to Scott Gray, chief executive officer of Clincierge.
“Patient recruitment and retention is an especially acute problem for rare and orphan disease clinical trials, as patients are widely dispersed and may face issues, such as physical limitations, that affect their ability to readily participate in trials,” said Gray. “As a result, clear and consistent communications and personalized, “high-touch” support for patients and caregivers can go far to ensure a high level of participation throughout even very lengthy studies.”
He noted that patients need to clearly understand the level of support that will exist for them throughout a study, especially for trials requiring multiple visits to distant study sites, so that the burdens of participation are not overwhelming. “Knowing upfront that most of the logistical burdens and costs of trial participation will be handled for a patient and their family, and that there will be someone they can talk with by phone throughout the study in their own language and time zone can strongly encourage their enrollment,” Gray said.
“Sites, too, need to understand what support will exist for patients, separate from what they themselves offer,” Gray continued. He noted that rare disease trial sites play a large role in deciding which studies they will take on, and that decision is often made based on the “total package” of how the trial is designed and what services are being offered to patients upon enrollment that will help them to participate and remain on study through the full duration of the trial.
By overcoming burdens to patient enrollment in clinical trials and helping them to remain in the study despite the often significant challenges of continued participation, Clincierge’s hospitality-oriented services are reducing clinical testing time and cost, while improving the overall performance of clinical trials.