Coronavirus Research

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

Ailsa Bosworth MBE

National Patient Champion, National
Rheumatoid Arthritis Society (NRAS)

Please participate in the studies and surveys below:

Medical Technology Group Patients and Medical Technology survey

CORE - UK, Kings College London Study

COVID-19: Social Distancing with Chronic Pain Study

Foot Health During the COVID19 Crisis survey

Impact of COVID19 on health-related quality of life for people with inflammatory arthritis survey

Experiences, Concerns and Support Needs of People Who are/were ‘Shielding’ due to Covid-19 and their Family Members survey by the University of Huddersfield

Second survey for Wellbeing and Activity Behaviours in Rheumatoid Arthritis Study by the University of Birmingham

Researchers from the University of East Anglia in Norwich are launching a new study to see how Covid-19 and lockdown are affecting people with bone, joint and muscle pain.

COVID19 symptom tracking app - The COVID Symptom Tracker was designed by doctors and scientists at King's College London, Guys and St Thomas’ Hospitals working in partnership with ZOE Global Ltd.

NIHR Clinical Research Network Thames Valley and South Midlands (LCRN) - The LCRN is supporting studies into COVID-19.

Global Patient Registry - Calling on rheumatology health professionals to participate in gathering patient data.

Join the European patient registry - A patient-powered registry of adults with rheumatic diseases, and parents of children with rheumatic diseases, in the setting of the COVID-19 pandemic.

Patient Access COVID-19 Symptom Surveillance - Help scientists identify high-risk areas and slow the outbreak of coronavirus.

The REUMAVID Survey: A European wide survey for those living with a rheumatic disease.

The COVIDENCE UK Research Study has been developed in response to the outbreak of coronavirus (COVID-19).

Our Covid Voices is a new National Voices’ website where people in the UK can share their experiences of life under lockdown.