Working with RDRP - The Patient Perspective
Jan-2026
Participating in a clinical trial can be a stressful experience, which is why the family of a clinical trial participant supported by our Clinical Trial Support Team chose to share their experience of working with us.
How We First Heard About RDRP
When my child was identified as a possible candidate for the clinical trial, the hospital study team told us about Rare Disease Research Partners (RDRP) and how they would help support our family. They explained that RDRP would take care of things like travel, accommodation, and getting our expenses reimbursed. We were given some consent forms to sign and send back so RDRP could contact us directly.
Getting to Know the RDRP Team
Not long after that, we were introduced to two coordinators from the support team. They emailed us to say hello, explain who they were, and let us know how they’d work with us, the hospital team, and the study sponsor.
We then set up a video call so we could meet properly. It was really nice to put faces to names and just chat things through. They answered all our questions, asked about our preferences, and made sure they understood any special requests we had. That first call really helped everything feel easier and less overwhelming.
Sorting Out Paperwork and Visas
They asked us to send over copies of our IDs, like passports or driving licences, just to make sure everything matched up for travel bookings. They even helped with ensuring our IDs were sent securely.
Because we needed VISAs, RDRP brought in their VISA specialist, who walked us through the whole process and helped book appointments at the Immigration Office. Having someone guide us through that made a huge difference and took a lot of pressure off.
Booking Travel and Places to Stay
Once they knew our travel preferences, RDRP started looking at flights, accommodation, and transport such as taxis. If there were a few different options or something they wanted to double-check before booking, they always came back to us first. We never felt like decisions were made without us, which we really appreciated.
All the Details (and Emergency Contacts)
Once everything was booked, they sent us an email with all the details in one place. It included our full travel itinerary, booking references, baggage allowance, seat numbers, hotel check-in and check-out times, and info on what the study covered, like meals.
They also gave us emergency contact numbers for the support team. Since the study was in a different time zone, it was really reassuring to know we could reach someone at any time if something went wrong.
Travel Days and Follow-Up
When travel day came around, we felt prepared because we had everything we needed. And if anything had gone wrong along the way, we knew we could call RDRP for help.
After each study visit, they checked in with us to see how things went and reminded us to submit our expenses form so reimbursement could be sorted quickly.
Getting our Expenses
Once we sent in the expenses form, the support team processed it pretty quickly. They checked everything over and only reached out if something was missing or unclear. Most of the time, we were reimbursed within less than a week. If there were any delays, they kept us informed, which we really appreciated.
Planning the Next Visits
For future visits, they always checked back in with us before booking anything, even though most things stayed the same. They also coordinated closely with the hospital team to make sure dates and times were correct before confirming travel.
Moving Closer to the Study Site
At one point, the study required us to move closer to the hospital. RDRP worked closely with us to find long-term accommodation that worked for our family. They handled rental payments and deposits directly, but we also had the option to find a place ourselves if we wanted to see it first.
Throughout the whole process, they stayed in regular contact, making sure the place met our needs and fit within the study budget. They also worked with the hospital team to make sure everything was suitable for our situation.
ABOUT OUR CLINICAL TRIAL SUPPORT SERVICE
Our dedicated team of coordinators use their extensive knowledge of rare diseases and experience to support patients and their families when attending worldwide clinical trials. We do this by offering personalised logistics support throughout the clinical trial journey. We listen, understand, find solutions, and treat every patient as an individual
