Media Monitoring: 23 – 29 September

A 2016 to 2021 landscape review presents an overall picture of UK rare disease research funding across government, charities and industry.
Of the investment, motor neuron disease (or amyotrophic lateral sclerosis, the most common type of motor neuron disease) received the single largest amount of funding in the portfolio, around 8%.
Over the same period, more than 500,000 participants were recruited to take part in rare disease research studies that were open or active through research supported by the NIHR Clinical Research Network (CRN).

Secretary of State for Health and Social Care, Steve Barclay, has unveiled measures to tackle aortic dissection, a life-threatening heart condition that kills 2,000 people every year.
Speaking at a research event to mark Aortic Dissection Awareness Day, the Health Secretary announced the formation of an NHS working group that will bring together clinical experts and charities, to improve diagnosis and treatment of the condition.
The group will review the whole patient experience when it comes to aortic dissections, and pinpoint opportunities for future improvement, including the potential benefits of genetic testing.

The UK Health Security Agency (UKHSA) has provided new essential genomic sequencing equipment to the Caribbean Public Health Agency (CARPHA).
The equipment will help strengthen genomic surveillance at CARPHA’s medical microbiology laboratory in Trinidad by automating the process of preparing up to 384 genetic samples for sequencing all at once.
This partnership, facilitated through the New Variant Assessment Platform (NVAP) led by UKHSA, underscores UKHSA’s ongoing commitment to improving global health security and pandemic preparedness.

Gender inequality and discrimination impede timely diagnoses and quality care for women around the world, says report
A second study published in the Lancet Global Health suggests 1.5m premature cancer deaths in women under 70 in 2020 could have been prevented with the elimination of exposures to key risk factors or via early detection and diagnosis.
It also calls for strategies targeted at increasing women’s awareness of cancer risk factors and symptoms, along with increasing equitable access to early detection, diagnosis and treatment of cancer.

The COVID-19 pandemic highlighted the importance of genomics in our public health toolkit to prepare for and respond to pathogens with pandemic and epidemic potential.
As countries build on the genomic surveillance gains from the COVID-19 pandemic, questions are arising. How should genomic surveillance capacities be sustained? What priority pathogens should have genomic surveillance components? What will it cost to operate genomic surveillance systems?
This step-by-step guide outlines key considerations and an approach for developing a national strategy. It is intended for use by all stakeholders at the national and subnational levels relevant to the development and implementation of the strategy, including health authorities, One Health partners, donors, public health officers, academia, the private sector and laboratory specialists.

Helen Marsden, founder of consumer blood testing company Medichecks and its new business-to-business arm Plasma by Medichecks, explores how remote testing is spearheading innovation in digital health.

Ian Bolland is joined by Rollie Carlson, CEO of Immunexpress as he provides some insight into the challenges of diagnosing sepsis and the technology that is being developed to tackle it.