How Covid-19 rocked rare disease communities

Press/Media: Expert Comment


Services that many patients see as vital to manage their conditions, such as speech therapy and physiotherapy, were considered ‘non-essential’ during the lockdown and were forced to shut their doors. Restricted access to support has often led to family members taking a much greater role in their loved one’s care, says Professor Amy-Jayne McKnight, a molecular epidemiologist at Queen’s University Belfast. “Parents were left on their own with no access to support.”

“Having to drive for three hours to sit in hospital for a 10 to 15-minute appointment and then drive three hours home again is not the best use of anyone’s time,” says McKnight. Now that remote monitoring is more common, it’s key to ensure test results can be embedded in electronic healthcare records so experts can quickly access an up-to-date account of a patient’s condition. 

More focus on remote care could also present opportunities for clinical research into rare diseases. Even before Covid, conducting clinical trials for rare conditions was challenging due to the small numbers of people in each country living with a particular illness. Rare disease patients often had to travel long distances to participate in medical research. However, ‘decentralised clinical trials’ – which rely on virtual collaboration between researchers, medical teams and patients – are becoming more common. Collecting patient data using digital technology, such as wearable devices, rather than in-person tests might attract and retain a wider pool of trial subjects. It could mean treatments are approved faster. 


Period22 Nov 2021

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  • Rare Disease
  • carer