The importance of capturing Real World Data
In recent years there has been growing evidence of the need and value of capturing real world data in addition to the data coming from clinical trials, meta-analysis and registries for example. Never in recent times has this been more important than now when it comes to capturing all kinds of data relating to COVID-19. No-one could deny that the impact this pandemic has had on us all has been far reaching and its effect will last well beyond the time when a vaccine is available for all.
As a consequence, you may not be surprised to know that NRAS has been contacted by many teams of researchers at a variety of universities to conduct research by survey on the impact that COVID-19 is having on people living with RA and adult JIA. NRAS supports a huge amount of clinical and academic research as we believe that everyone should have access to research studies as this has many benefits for individuals living with a long term condition like RA. NRAS members and the wider RA/Adult JIA public have always been very responsive and willing to answer such surveys and for that we thank you.
A number of surveys will be coming out through NRAS social media and online channels over the coming weeks from researchers around the UK and Europe who are seeking answers to the impact and effect that COVID-19 has had and is having on you and your family. We very much hope that you will be willing to complete these surveys if you meet the criteria as many of you have done in the past. Ultimately, the information derived from these studies will help to improve care and the way the health system works. NRAS will publish the results on our website in due course.
We thank you for supporting these important studies and hope that you and yours will stay safe and well as we continue to fight this awful virus.
With many thanks