Over the past five years, clinicians have reported more than 5,000 cases through the BPSU's active surveillance system, contributing to a growing evidence base for rare paediatric conditions. During the same period, BPSU-supported studies generated 36 peer-reviewed publications. These have helped shape clinical practice, public health policy and future research priorities.
The report highlights studies addressing both emerging and established child health challenges, including avoidant restrictive food intake disorder (ARFID), neonatal herpes simplex virus infection, pneumococcal meningitis and neonatal complications of COVID-19. These studies have provided the first national data on conditions such as ARFID, identified opportunities to improve recognition and treatment of serious neonatal infections, informed vaccine policy and strengthened understanding of the long-term impacts of COVID-19 in newborn babies.
Alongside its surveillance work, the report highlights the BPSU's commitment to patient and public involvement, support for early-career researchers through initiatives such as the Sir Peter Tizard Bursary, and the continued development of its surveillance programme, including the introduction of a new electronic reporting platform.
Dr Peter Davis, Chair of the BPSU Scientific Committee, said:
This report demonstrates the power of collaboration in improving our understanding of rare childhood conditions. As we approach the BPSU's 40th anniversary in 2026, we remain committed to strengthening surveillance, supporting researchers and ensuring that the voices of patients, families and clinicians continue to shape our work.
The publication of the Five-Year Report marks an important milestone as the BPSU celebrates 40 years of surveillance in 2026, recognising the contributions of reporting clinicians, researchers, patient and public representatives, members of the Scientific Committee and Partnership Board, and partner organisations.
Download the five-year report below, or see the report on screen on the BPSU annual reports page.