Decentralised by Design: Bringing Rare Disease Trials Closer to Home

As the demand for more inclusive and patient-centred rare disease research grows, decentralised and hybrid trial models are becoming indispensable. FutureMeds’ decentralised solution, FutureMeds @home, has been helping patients and clients across Europe since 2012, and our team looks forward to sharing insights and perspectives at the 2025 Rare Trials Summit.

Rare disease research faces unique challenges: small, geographically dispersed patient populations, highly specialised protocols, and the urgent need to reduce trial burden for participants and families.

Traditional site-based trial models often fall short in this space. But decentralised clinical trials, especially when delivered through hybrid models, can radically increase access and improve retention without sacrificing oversight or data quality.

At FutureMeds, we believe decentralisation must be deliberately designed not only to extend reach, but to genuinely reduce burden on those living with rare diseases.

Our team looks forward to joining the Rare Trials Summit 2025 in Boston, where Rebeca Gonzalez, Director of Decentralised Client Solutions, will speak alongside leaders from Avidity Biosciences, Gooseberry Research, and Rare Disease Research in a fireside chat titled:

"Decentralised by Design: Operationalising Hybrid Rare Disease Trials."

Tuesday, September 9, 2025

2:00–2:30 PM ET

Track 2: Aligning Trials with Patient-Lived Experiences to Scale Trials and Reduce Patient Burden

Speakers include:

• Rebeca Gonzalez, MA, FutureMeds

• Kristi Clark, MBA, Avidity Biosciences

• Alpa Khushalani, Gooseberry Research

• Edward Smith, MD, Rare Disease Research

Our @home Service: Bringing the Trial to Patients

FutureMeds @home solution plays a vital role in hybrid trial delivery. For rare disease studies, where patients may be fragile, remote, or face mobility and caregiver challenges, home-based care is often the difference between participation and dropout or exclusion altogether.

Key features of FutureMeds @home:

• In-home visits by trained nurses across Europe

• Seamless coordination with principal investigators and research sites

• Full GCP-compliant data collection and sample handling

• 320+ trials supported across 24+ TAs and 140+ indications

• 14K+ homevisits delivered in the last 10 years

• 100% patient satisfaction in our most recent @home-supported rare disease study

Let’s Talk at Rare Trials Summit

Both Iwona Tongbhoyai, Chief Client Solutions Officer, and Rebeca Gonzalez, Director of Decentralised Client Solutions, will attend the Rare Trials Summit and are currently booking meetings with Sponsors, CROs, and researchers looking to operationalise hybrid rare disease trials. If you or your colleagues are attending, we’d love to connect, whether it’s a strategic meeting or an informal catch-up on the latest in cardiovascular research delivery.