Maintaining the UK’s standing as a pacesetter in life sciences has been a priority ever since the 2016 Brexit vote, and from the point, there are considerations concerning whether the country can still participate in European Reference Networks (ERNs) when the split from the EU. John Wallace, a representative of the organization Autoinflammatory UK, afore mentioned the ERNs area unit very important therein they permit patients and aid suppliers to link and share data.
They have been significantly necessary for rare diseases wherever patients typically become specialists in their conditions, per Wallace, permitting doctors across Europe and therefore the UK to coordinate efforts with input from affected families.
Losing contact with ERNs might create it tougher to recruit patients to trials, afore mentioned Wallace, whose partner and son each have the ultra-rare disease Familial cold autoinflammatory syndrome-2 (FCAS2) and runs a support cluster for patients with connected conditions.
As the variety of patients with rarer conditions in every country is low, it’s solely attainable to recruit enough patients for clinical trials by finishing up trials across countries.
A state of affairs wherever UK trials are not any longer ready to recruit European patients would reduce the advantages for patients across the full of Europe, still as risk damaging the UK and European science. The network covers around 20,000 aid professionals in 300 hospitals inside 26 countries, taking care of a couple of million rare disease patients.
However, with over 6,000 known rare diseases, they influence 25 to 30 million within the EU, around 5% of the EU population, and 6 % of the United Kingdom population, in comparison to the population of Belgique and The Netherlands combined.