From clinical trials support and specialist medical communications to research and real-world evidence, Rare Disease Research Partners are serving rare disease communities with their patient-focussed approach. We caught up with Lianne Mott, part of the logistics support team within the Clinical Trial Support Services, to find out a little more about what actually happens within their department and some of the changes they've had to make since the COVID-19 pandemic.
What is your job role at RDRP?
We arrange the travel, accommodation and financial reimbursement of patients and their families who are attending clinical trials. We communicate and build relationships with the patients and their families and liaise with sponsors/pharma companies, clinical trial study sites and clinical research associates. Part of our role is to travel to clinical trial sites worldwide to meet the clinical teams and risk assess potential accommodation, though COVID-19 restrictions have halted this for the time being. What advice would you give to someone who is considering joining a trial?
Although not really something we get involved with my advice would be to research the trial as much as possible. To understand how often study visits are required and the significant impact it will have on the life of the patient and their family. Also, to not be afraid to ask questions if they don’t understand something or if they have concerns. And to speak to the MPS Society’s Support and Advocacy Team about it.
What makes RDRP different to other clinical trial logistics teams?
Every patient has their own requirements and we do whatever we can to make sure that we address their needs. Whether it is speaking to the trial sponsor to request specific requirements or requesting extra assistance with travel, we do whatever we can to make the process as stress free as possible. During the pandemic, we have had to closely monitor travel restrictions and entry requirements to countries for patients and their families. This includes contacting foreign government health departments, airports, COVID testing centres and airlines to directly assess regulations and travel restrictions. How do you organise travel and accommodation for the trial patients, is there anything you have to consider?
We book through a variety of different channels. We have a travel provider who we work closely with to book flights, accommodation, trains and taxis. We do also book direct with many companies ourselves. For flying, we have to consider if children require their own seat and/or a car seat to travel in. We have to think about access to taxis for patients in wheelchairs. We need to consider those patients travelling by train and if they require wheelchair spaces, seats close to toilets and assistance through the station. With hotels, we need to make the arrangements based on the length of their study visit. For example, if the visit is an extended stay we would book an apartment with cooking facilities so that they can cater for themselves. We also need to make sure that the rooms we are booking are suitable for the particular patient such as accessible rooms, rooms on lower floors etc. What travel advice can you suggest to our members?
To always ask questions and make requests. Some patients and families may not want to request their specific requirements but if we are able to help, we will! Travelling during the pandemic can be very daunting for the patients and their families and we want to help them feel as comfortable as possible.
What’s the best part of working for RDRP?
I think it is knowing that we take the pressure off the patients and families and allowing them to concentrate on the important things.
MPS Commercial is a Private Limited Company Registered No 08621283. MPS Commercial trades as Rare Disease Research Partners and is a wholly-owned, not-for-profit subsidiary of the Society for Mucopolysaccharide Diseases (the MPS Society), Registered Charity in England and Wales No. 1143472. Rare Disease Research Partners social objectives are to reinvest any surplus to support the mission of the MPS Society to transform the lives of patients through specialist knowledge, support, advocacy and research.