With individual rare diseases affecting such a relatively small proportion of patients globally, capturing effective data to aid with research into treatments is incredibly important. Relying on data from clinical... read more →
The need for real-world evidence to inform therapies can no longer be denied. Gathering standardized feedback from patients where they live can give researchers richer details into the effectiveness of... read more →
Front and center with the COVID-19 pandemic era is this question: How can we enable research to move forward while keeping patients who participate in studies and clinical trials safe?... read more →
With so much information whizzing by us these days because of the COVID-19 crisis, and with so many people posting pictures of themselves in #quarantine or #selfisolation, or talking about... read more →
The crisis caused by COVID-19 affects different groups of people in different ways. One thing is certain: each of us is being forced to adapt to rapidly new circumstances and... read more →
For Julian Summers, it was a long time coming. For his brother John it was too late: he had passed away a year ago, succumbing to Alstrom Syndrome. What could... read more →
