Dr Sheuli Porkess
Executive Director of Research, Medical and Innovation, ABPI
The word ‘unprecedented’ has been overused this year, but it is still the most appropriate to describe the impact that COVID-19 has had on clinical research in 2020.
In order to get COVID-19 research up and running in the face of a pandemic, COVID-19 research studies were prioritised – a decision that, unfortunately, has had an impact on research on other diseases, including rare diseases.
Reduction in access to treatment options for rare disease patients
The decision to prioritise COVID-19 research was not taken lightly and some researchers did keep their trials going throughout the pandemic, introducing measures like direct-to-patient shipments of investigational medicinal products and remote monitoring of study patients via video or telephone.
Despite these adaptations, not all trials were able to continue and, for people with rare diseases, that means that they may have been left without treatment options. For some with progressive conditions, the opportunity to participate may have been lost entirely. So it’s very important we get clinical research in all disease areas back up and running. Since May, we’ve been working closely with Government to do this.
Not all trials were able to continue and, for people with rare diseases, that means that they may have been left without treatment options.
Creating safe environments to keep research moving
One key thing is the need to create safe spaces and processes for research to be carried out, to ensure research participants, including those with rare diseases, are protected while they take part.
It is also important that we restore patient and public confidence in visiting hospitals, which will help ensure they continue to get the care and treatment they need. We know Government is also assessing capacity for research, so that research sites have the workforce to be able to deliver COVID-19 and non-COVID-19 studies.
There is progress, but there are still thousands of studies that are paused.
We will continue to work together with the NHS, Government
and, most importantly, patients, to help get critical UK research fully back up
and running. As the UK looks to the future of treatment for rare diseases, it’s
critical that we do this now.
