The relevance of registry and real-world data during the COVID-19 pandemic: an interview with Philip Robinson
Philip Robinson (Royal Brisbane & Women’s Hospital; Brisbane, Australia) discusses his involvement in the recently established COVID-19 Global Rheumatology Alliance and the Global Rheumatology Registry, as well as the importance of such registry and real-world data during the COVID-19 pandemic.
In March, the newly established COVID-19 Global Rheumatology Alliance launched a registry to facilitate global sharing of information from medical practitioners on how COVID-19 is impacting patients with rheumatic diseases and how the virus interacts with rheumatic disease-associated comorbidities and medications.
Healthcare practitioners have been advised to report information from all cases, even if patients have mild or no symptoms. The registry hopes to remedy the lack of information for patients and their healthcare providers about the impact of rheumatic diseases on COVID-19 susceptibility and disease trajectory.
In this interview, Philip Robinson, Chair of the Alliance and a Senior Staff Specialist within the Department of Rheumatology at Royal Brisbane & Women’s Hospital (Brisbane, Australia) discusses his involvement in the recently launched registry, as well as the relevance of such registry and real-world data during the COVID-19 pandemic.
Please could you introduce yourself?
I am a Senior Staff Specialist at the Department of Rheumatology at the Royal Brisbane & Women’s Hospital and an Associate Professor at the School of Clinical Medicine at the University of Queensland (Australia).
What was the driving force behind setting up The COVID-19 Global Rheumatology Alliance and the Global Rheumatology Registry?
The driving force was really the absence of data on how patients with rheumatic disease would respond to COVID-19 infection.
In the absence of any information, observing real-world outcomes from large numbers of cases helps both inform current healthcare practice, as well as highlight patterns that may warrant further investigation..."
The initial data suggest that most individuals who contract COVID-19 have a good prognosis, however, approximately 20% of all COVID-19 cases are severe or critical forms of the disease. We didn’t know if these figures also applied to patients with rheumatic diseases or who were on immunosuppressants; this was the main driving force behind establishing the Alliance and registry, to remedy this lack of data.
Why is it important to specifically focus on individuals with rheumatic diseases with this registry?
I am a rheumatologist and so patients with rheumatic disease are my area of interest, however, more generally, there are various large published case series concerning the outcomes of undifferentiated patients who contract COVID-19. What is lacking is information about these outcomes in patients with rheumatic disease.
Gathering data on infections in patients with rheumatic diseases may aid risk stratification and improve understanding of the effects of rheumatic medications in combination with the virus, especially for those on immunosuppressive or corticosteroid regimens.
What is the importance of such real-world, registry data for informing healthcare decision making amid the current COVID-19 pandemic?
In the absence of any information, observing real-world outcomes from large numbers of cases helps both inform current healthcare practice, as well as highlight patterns that may warrant further investigation with more robust research techniques.
What is the importance of such global, collaborative initiatives to collect data during this pandemic?
It simply would not be possible to quickly gather such large amounts of data without having a global approach. Given this, it is important to be collaborative and make a big effort to include everyone who has interest in contributing.
What are some of the challenges associated with collecting and curating registry data, and how may these be overcome?
There can be various ethical and Institutional Review Board issues associated with gathering and disseminating large amounts of patient data, however these were not significant challenges for us in establishing the registry.
It simply would not be possible to quickly gather such large amounts of data without having a global approach."
Instead, organising and setting up the global infrastructure has been a challenge; managing large numbers of people without any budget and trying to do so all in as short a time as possible has been the biggest challenge.
Is the registry an initiative you may consider maintaining in the future or using to answer additional research questions beyond responses to COVID-19?
At this point in time it is not possible to answer this question. If the Alliance continues to be relevant and serve a purpose, then it is likely it will continue beyond the COVID-19 pandemic. However, if not then it may not be maintained into the future.
Philip C. Robinson reports no competing interests related to this work. Outside of this work he reports personal consulting fees (<$10,000 each) from Abbvie, Eli Lilly, Janssen, Novartis, Pfizer and UCB and non-financial support from Roche.