Harnessing Specialised Algorithms To Detect Rare Disease in UK Primary Care: CAPTURED Trial

OPRI (Observational and Pragmatic Research International Limited) is excited to launch the OPC (Optimum Patient Care) CAPTURED program, a trial targeting reduction in diagnostic odyssey in rare diseases. Patients typically see on average five doctors, receive three misdiagnoses, and must wait up to four years before given the correct diagnosis (Rare Disease UK, 2026), this is known as the diagnostic odyssey.

CAPTURED (Channelling Alogrithm Proficiency To Understand, Recognise and Elucidate Disease) is a cluster randomised controlled trial running over 5 years. A unique collaboration with up to 500 general practices across the UK, CAPTURED utilises specialised algorithms and tailored primary care quality improvement support from OPC (a not-for-profit social enterprise improving management of chronic diseases within primary care) to identify, diagnose and refer patients with specific treatable rare or difficult-to-diagnose disease.

The first quality improvement program, in conjunction with Mendelian, will focus on rare bone disorders and employ Mendelian’s case-finding technology. This integration of advanced clinical decision support tools aims to bypass the traditional "diagnostic odyssey," moving patients from primary care to the correct specialist path significantly faster.

The success of the program will be evaluated by OPRI, an international organisation that delivers observational and pragmatic research driving change in clinical practice globally. Professor David Price, Co-Chief Investigator for the trial and Head of the OPRI, emphasised “CAPTURED aims to address an important unmet need in supporting patients to reach a diagnosis. It enables earlier access to the treatments that they may need, with the potential to reduce disease progression and symptom burden”.

We can get patients a faster diagnosis if we work together. If your practice is interested in participating in CAPTURED, or if you are developing a rare disease algorithm or program, please contact the team at: CAPTURED@opri.org.uk, or visit our website at https://www.opri.org.uk/captured.

About OPRI:

Observational & Pragmatic Research International Limited is an independent research organisation distinguished in accessing unique global data sources to deliver observational and pragmatic research which drives change in clinical practice around the world. OPRI is underpinned by a faculty of experienced clinical experts, epidemiologists, data analysts, statisticians, medical writers and medical scientists. OPRI’s services range from understanding the burden of illness to evaluating a medicine and/or medical devices' safety and effectiveness in clinical practice. For more information, contact us at: info@opri.sg.

About OPC:

Optimum Patient Care (OPC) has over 20 years of experience supporting primary care within the United Kingdom. OPC counts on a diversity of the best professionals in the UK lead by Professor David Price. We make a difference to patients, using real-life research. Contact us at : info@optimumpatientcare.org