Rare Disease Trial Participants Need Extra Support and Assistance, Survey Shows
Participants in trials for rare disease treatments often need additional travel support, according to a new survey that indicates participants and their caregivers want personal assistance with logistics.
The survey, conducted by patient support service company Clincierge, found that 95 percent of the trial participants responding and 98 percent of their caregivers considered it essential to have a single point of contact to help them throughout a trial, especially when arranging travel plans.
All 60 respondents had taken part in a trial that required them to travel by air or at least three hours by ground in the past four years.
Key trial contacts were important to building personal connections, particularly ones that could be reached at any hour, respondents said. Asked specifically what they wanted to see from trial support, 100 percent of both patient and caregiver respondents named support residing within their own time zone as by far the most important element.
Other important characteristics included support staff that understand the disease (55 percent), personnel that speak the same language (53 percent), staff with positive attitudes (46 percent) and staff that understand the trial process (29 percent).
Reporting on the kind of travel assistance their trials had provided, 63 percent of participants said they received help booking hotels, 53 percent received help booking flights, 47 percent were assisted in booking ground transportation and 43 percent were provided with ground travel transportation options.
A smaller percentage of participants were presented with flight options (30 percent), Americans with Disabilities Act (ADA)-compliant hotels (27 percent), hotel options (27 percent) and ADA-compliant transportation (20 percent).
Access the full survey here: https://bit.ly/3xVZhqZ.