Cancer registries are not an absolute novelty. There are about 700 in the world, yet they still cover only an estimated 21% of the total population. There is no doubt that much more could be done because of the collection of those that are defined ‘Real World Data‘represents an opportunity to better understand how cancer is treated at a clinical level in the various territorial situations and from there to start to improve what is wrong. Meanwhile, some international initiatives have already been launched and are concretely demonstrating why it is important to invest in the collection of ‘Real World Data’ even more in this phase of the Covid-19 emergency.
The study in Asia
A practical demonstration of the usefulness of Real World Data comes from the Emoo (Evaluating Medical Oncology Outcomes) study launched in 2017 by the European Society for Medical Oncology (Esmo) in collaboration with the International Agency for Research on Cancer (Iarc), the Danish Cancer Society and other national partners in Asia and specifically in Singapore, Malaysia, Indonesia and Thailand. The aim of the study was to create population-based clinical cancer registries locally, starting with a pilot project on lung cancer. In the four chosen regions, patient demographics and clinical characteristics were collected, including lung cancer type and stage, histopathology, and presence of genetic mutations. The results will be published later this year, but an initial analysis of data collected on 2,200 patients showed unequal levels of care in each of the countries involved. For example, the genetic mutations underlying cancer have been identified in a few patients, because some types of molecular tests required to do so are not available in many parts of Southeast Asia. Researchers expect oncology companies from participating countries to be able to leverage these insights and lobby their respective governments for funding to maintain and expand databases in the long term.
RWD and Covid-19: the Teravolt register
The urgency for Real World Data has become even stronger with the pandemic. As explained in the latest issue of ‘Perspectives’, Esmo’s digital magazine, Marina Chiara Garassino, of the University of Chicago which as early as 2020 pushed internationally for the collection of data on Covid-19 in individuals with thoracic cancer: “We suspected that advanced age, smoking habits and comorbidities of these patients would have put them at greater risk for serious complications from coronavirus disease, and we soon got the feeling from our clinical practice that they were actually doing worse than other cancer patients, ”Garassino said. This is how the Teravolt registry (Thoracic Cancers International COVID-19 Collaboration) was born, which collects data from 220 centers around the world with information on 1,400 patients. By analyzing these data, it was possible to conclude that most cancer treatments, with the possible exception of chemotherapy, are not harmful in the context of a coronavirus infection. Other information ‘derived’ from the analysis of this database is that the mortality rate of chest cancer patients with Covid-19 is more than 30%, much higher than the general population or even the population of cancer patients. .
RWD, cancer patients and Covid-19 vaccine
Another registry that saw the light in 2020 is Esmo-CoCare launched to collect data on therapeutic approaches and the impact of Covid-19 on all types of cancer, but also to monitor cancer patients vaccinated against this virus. Valuable information as most vaccine studies did not include cancer patients. The registry will help assess the safety and efficacy of vaccines for this population and find out if some are preferable to others in various patient subgroups. In the long term, furthermore, the follow-up of the cases recorded in the database will also allow to answer open questions ranging from the duration of immunization and the rates of reinfection, to how long the symptoms of the disease can affect cancer patients and how their results compare with those of those who have a similar tumor but who have never had Covid-19.
The problem of bureaucracy and privacy
Large-scale international data collection is certainly a unique strength of registries such as the Teravolt and Esmo-CoCare, but it also brings challenges including the amount of bureaucracy involved in adapting to the ethical and regulatory requirements of different countries. According to Garassino, designing a data sharing framework and anonymization process to comply with the European Data Protection Regulation (GDPR) and national legislations around the world was the most difficult task of the Teravolt project. The fact is that when you put together information from various sources that collect it for their own distinct purposes, using different electronic health records designed at national or regional level, you are faced with a problem of uniformity of the data itself which is fundamental in order to have a truly reliable subsequent analysis avoiding errors of interpretation. For the Esmo-CoCare registry, in fact, the data collection processes were defined with the participating entities almost on a case-by-case basis to ensure their reliability.
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