LifeArc

Commercial

OFHS240216

Our study aims to discover, describe and analyse groups (‘cohorts’) of Our Future Health participants with uncommon or rare health conditions. Our ability to characterise these rare disease cohorts with scientific health data observations will allow LifeArc to design ‘real-life’ studies. These are needed for turning existing ideas on detection, diagnosis, prognosis, treatment for rare health conditions into actual patient benefit. Study objectives:  1. Develop a search and analysis tool for consistent discovery and statistical description of groups of OFH participants with, or at risk of, specific rarer health conditions. - Statistical descriptions include summaries of age, sex, presence of other health conditions or known causes of disease and other health status information.  2. Measure how many childhood cancer survivors there are in the Our Future Health participants and summarise information on their longer-term health outcomes. This will include cancer recurrence, new cancers, other health issues and quality of life.   3. Discover and describe additional cohorts for rare or uncommon health conditions which present with unmet patient needs that need to be addressed. This will likely include bronchiectasis (lung damage causing excess mucus and infections), lung fibrosis, rare forms of dementia and specific forms of childhood cancer. LifeArc is a self-funded medical research charity focused on turning scientific ideas into patient benefit. We work with patient charities, researchers, clinicians, and industry through funding, investment, laboratory and data science.    LifeArc prioritises rarer conditions, including childhood cancer, chronic respiratory infections and neurodegenerative diseases. For these, we need to establish if Our Future Health includes participant groups who could later be asked to participate in research studies seeking to address unmet patient needs. These needs include early detection, accurate diagnosis, better treatment and decisions.  LifeArc’s childhood cancer team has identified an urgent unmet need for better decision-making. Childhood cancer survivors face a nine-fold increased risk of premature death. Health data can guide treatment decisions and prevent life-limiting side effects. Our first scientific goal in this study is to establish usefulness of Our Future Health for further childhood cancer studies, including information on long-term patient outcomes.  Beyond childhood cancer, LifeArc will prioritise other conditions with unmet patient needs, further information is available here: Translational Challenges - LifeArc  Advancements: LifeArc’s tools and findings will help develop Our Future Health studies to generate new data, prioritize research funding based on evidence, and share research information with external researchers, patient charities, and other partners. 

What will we do in this study?   Using existing data within OFH, we will discover groups of participants who have or are at risk of a range of specific rare disease conditions. We will describe those groups in terms of size as well as healthcare, biological and social factors causing disease or affecting patient outcomes. We will start with the question if meaningful numbers of childhood cancer survivors exist in Our future Health, and if their long-term health outcomes are clear from these data.   How will outcomes from this study benefit the public?   Our study results will provide LifeArc and partners with valuable information to guide future real-life studies and trials, centred around our efforts to provide real benefit to patients. Knowing potential patient groups in OFH, we can plan studies to provide evidence for moving new tests, treatments or digital healthcare tools from promising idea to real use in a healthcare or home setting, making improved healthcare outcomes possible. Findings will also be shared with patient groups that LifeArc and its partners are already engaged with, helping inform the direction and impact of research studies for patient benefit.   

Public Health Research

02/06/2025

25/04/2025

TRE