A report from the Association of British Pharmaceutical Industry has been published this week with help from the ABPI Patient Organisation Forum and referencing work of the Archangel Newborn Screening Collaborative. Pompe Support Network is represented in both of these organisations through our membership of the LSD Collaborative.
The report presents the current progress, challenges, and opportunities within the UK genomics landscape. It also outlines the ABPI’s recommendations to the system, which are aimed at translating the UK's R&D expertise and vast infrastructure into improved patient access to genomic medicine. This includes:
- Developing collaborations to build the UK’s genomics research expertise and infrastructure, including data interoperability
- Working towards workforce upskilling for genomic-driven research approaches
- Supporting improvement of genomic medicine services across the four UK nations to bring patients equal access to genomics-enabled healthcare and research
- Ensuring that healthcare professionals have the required education and training to deliver genomics innovations to patients
Noticeable within the report summary is the highlighted paragraph:
The Archangel Newborn Screening Review found that the UK is lagging behind European counterparts, such as Italy, Iceland, and Poland, who screen up to four times as many conditions as the UK, where babies are only tested for 9 conditions. This means that babies in the UK are missing out on critical diagnostic testing and potential life-saving treatments.
Full report: Harnessing the UK’s genomics expertise to improve patient outcomes (abpi.org.uk)
Press notice: Patients missing out on world leading UK genomic capabilities (abpi.org.uk)