Our Future Health holds rich, in-depth data on its consented participants. For future research and the development of new tests and treatments, it’s important that researchers can analyse and study the data of participants who share certain health characteristics.  

We joined Our Future Health as a founding charity member in 2024 and are now launching our first study. 

The study – CohorTS* – will use our in-house data science capabilities to group the de-identified data of participants with shared characteristics and conduct analyses that could inform future diagnoses or treatments. These groups, known as cohorts, will be focused on people living with rare conditions, for example people with rare respiratory diseases or rare dementias.  

Within the overarching CohorTS study, we will first establish a tool to form and describe cohorts of participants who appear to have a given rare health condition, based on their diagnostic and other information. 

Then, we will investigate if it is possible to establish a robust and representative cohort of adult survivors of childhood cancer. If it is, we’ll analyse their long-term health outcomes in adulthood.   

We hope this work will pave the way for real-life clinical trials and studies, as well as further cohort creation, that could benefit both participants in Our Future Health and wider disease communities.  

Giovanna Lalli, Director of Strategy and Operations, said, “The future of rare disease research lies in the innovative and ethical use of health data. With Our Future Health as the largest health research programme in the world combined with ever-evolving data science, the potential to accelerate the development of new diagnostics and treatments to people living with rare conditions is vast.” 

* Characterising Cohorts for Translational Studies addressing unmet patient needs