Striving for a faster diagnosis for patients with rare and difficult to diagnose disease
Rare disease affects about 3.5–5.9% of the UK population and affects up to 446 million people worldwide
On average, patients see five doctors, receive three misdiagnoses and must wait four years before correct diagnosis (Rare Disease UK, 2016)
The CAPTURED trial will evaluate a series of quality improvement programmes each designed to reduce the time to diagnosis for patients with rare and difficult to diagnose conditions. The following steps outline the trial design.
ALGORITHM TECHNOLOGY
QUALITY IMPROVEMENT SUPPORT
DIAGNOSIS
CAPTURED is a clinical trial that will use computer software (called algorithm technology) and quality improvement support (support for GP practices to improve the quality of care for patients) to get patients who may have certain diseases diagnosed earlier.
Finding patients with rare conditions earlier, means patients can get the treatment or care they need.
Only anonymised information will be shared with the CAPTURED study team to answer the research questions. Patients cannot be identified from anonymised data. No personal details will be shared with the CAPTURED study team