Paediatric clinical trials are essential for ensuring that medications and treatments are safe and effective for infants, children and adolescents. Yet despite their importance, paediatric trials are among the most difficult to execute, particularly when it comes to retaining the young patients from start to finish.
Retention challenges in paediatric studies are complex. Children depend entirely on adults for their care, meaning trial participation impacts entire families. When caregivers are overwhelmed by the practical, emotional and financial toll of being involved in a study, they may choose to withdraw. Even if the trial itself offers clinical benefit. The result is a loss of valuable data, increased costs for the sponsor and most importantly, a delay in delivering therapies to children who need them.
Understanding the burden of participation in paediatric clinical trials
Families and carers taking part in paediatric trials face multiple challenges. Frequent travel to study sites can interrupt work and school schedules. Accommodation needs for siblings and support for parents are often overlooked. Children may feel anxious about medical procedures or unfamiliar environments. And for families dealing with rare diseases, there is often added pressure from the lack of existing support networks.
These challenges create real barriers to retention, which is why a patient-centred approach is essential. We believe paediatric trial retention is not just about keeping patients enrolled, but it’s about creating an environment where families feel supported, understood and empowered.
Removing obstacles through personalised support
At mdgroup, our approach is rooted in flexibility, empathy and practical solutions that reduce stress and improve access. One of the most effective tools in our support model is the use of dedicated navigators. These are not just coordinators, they’re trusted guides who support the families through the entire journey.
One showcase of our support was when a family taking part in a paediatric clinical trial for a rare childhood neurological disorder faced mounting logistical and emotional stress. Coordinating travel for regular study visits was overwhelming, especially with a young child who required continuous care. We stepped in to provide a comprehensive support package: from arranging consistent travel and accommodation, to offering home healthcare visits to reduce the need for site travel. Our expert navigator team ensured that every step of the journey was managed with care, while the child received a more comfortable and familiar clinical experience. This holistic support empowered the family to stay engaged and complete the study without disruption. Read the full case study here.
mdgroup provides remarkable clinical trial experiences for families across the globe. During a complex trial for a child with Danon disease, the family’s participation was at risk due to the extreme logistical demands of frequent long-distance travel. mdgroup assigned a dedicated navigator who became their single point of contact, coordinating transportation, managing hotel stays that accommodated all family members and ensuring that the child’s specialised dietary and clinical needs were met throughout. Our proactive planning and emotional support helped transform what could have been a burdensome trial into a manageable, even hopeful, experience for the family. Read the full case study here.
Making healthcare feel safe and human for young patients
Young children often struggle with unfamiliar environments, medical procedures or the stress of travel. Our teams are trained not just to deliver services, but to build trust with children and their caregivers.
In one long-running rare disease trial, a family needed sustained support over several years. mdgroup provided consistency through regular mobilehealth nurse visits, flexible scheduling and personalised logistical planning. These services allowed the child to participate in the study without excessive disruption to home life or school, building a trusting, lasting relationship with our healthcare professionals. Our presence became a source of reassurance and the child felt more confident and comfortable during procedures. Read the full case study here.
In another powerful example, a child became distressed during a scheduled procedure. Our mobilehealth nurse quickly adapted the situation, bringing the visit to a more comfortable location and incorporating a familiar toy to create a calming environment. This kind of emotional intelligence is key to making trials more tolerable, and even positive, for young participants. Read the full case study here.
Standing up for families when it matters most
Sometimes our work goes far beyond logistics. In one case, a family participating in a cross-border trial for their child encountered issues with travel documentation. Our navigator responded immediately, liaising with border authorities, trial sites and sponsors to find a fast, compassionate solution. The result was uninterrupted participation and a family who felt truly advocated for throughout. Our team didn’t just solve the problem – they ensured the family felt seen and supported in a high-stress moment. Read the full case study here.
In another scenario, a child’s trial involvement was complicated by multiple medical, logistical and emotional challenges. mdgroup provided consistent and empathetic support tailored to the family’s evolving needs. From complex travel arrangements to last-minute changes in scheduling, our team stayed closely connected, adapting in real-time to whatever was needed. This responsiveness allowed the family to focus on their child rather than navigating the burdens of participation. Read the full case study here.
Why a patient-first approach is essential in paediatric research
Paediatric trials must be built around the needs of families. At mdgroup, we take this responsibility seriously. Our model is designed to reduce the emotional and logistical toll of trial participation through:
- Patient concierge services to manage travel, accommodation and onsite logistics
- Mobile health and decentralised trial solutions to reduce disruption
- Multilingual materials and simplified consent to make participation accessible and understandable
- Consistent, compassionate communication through dedicated navigators
- Long-term support plans for families in rare disease or high-burden studies
When children are treated with care and dignity and when families feel valued, retention improves – and so does the quality of the research. Our services are not just about keeping participants in a trial. They’re about helping families feel seen and supported at every step.
How can mdgroup support young patients and families around the world
mdgroup is a global organisation committed to transforming the clinical trial experience through personalised, patient-first solutions. With decades of experience supporting trials in rare diseases, oncology, paediatrics and beyond, we bring together technology, logistics and human connection to improve outcomes for patients and sponsors alike.
We work across the globe to deliver travel, home health, concierge and decentralised trial support that meets people where they are. Our mission is to deliver the personalised experience patients and their caregivers deserve when taking part in clinical trials. We remove barriers to clinical research and create meaningful, remarkable experiences for every patient, because when patients feel cared for, trials succeed.
If you’re running a paediatric trial and need help with retention, get in touch. We’re here to make research more human, one family at a time.
