Following the arrival of the coronavirus disease 2019 (COVID-19) pandemic, St. Jude Children's Research Hospital launched the first Global COVID-19 Observatory and Resource Center for Childhood Cancer, a dynamic platform to deliver resources for oncologists treating pediatric patients who have been diagnosed with or are at risk for the virus.
“It's a very dynamic platform; that's what it is designed as,” said Daniel Moreira, MD, an instructor at St. Jude, and director of Global Professional Education. Moreira was part of the development of the Global COVID-19 Observatory and Resource Center for Childhood Cancer, which the center launched in collaboration with the International Society of Pediatric Oncology (SIOP).
The secure, cloud-based platform has 3 components: a Resource Library for oncologists and researchers to access informational resources on COVID-19 as it relates to childhood cancer, a COVID-19 Registry to record and track de-identified data from pediatric patients with cancer who are also diagnosed with SARS-COV-2 infection, and a Collaboration Space to contribute to discussions, participate in surveys and polls, and participate in webinars.
“We want really a sampling of what COVID-19 looks like in children with cancer everywhere in the world,” said Moreira. “That is really the value of this resource.”
Since its launch in early May, the Global COVID-19 Observatory and Resource Center for Childhood Cancer has already been accessed by health care professionals in more than 100 countries.
In an interview with Oncology Nursing News
' sister publication, OncLive
, Moreira discussed further details about the Global COVID-19 Observatory and Resource Center for Childhood Cancer and what impact the results could have on the pediatric oncology community.
OncLive: You helped launch this global COVID-19 Observatory and Resource Center for Childhood Cancer. How did this platform come about, and what was the need to create it? What goals do you have for it?
Moreira: There is this massive paucity of information of how COVID manifests itself in pediatric cancer cases. When the pandemic started in China, it actually coincided with a group of infectious diseases from our partner programs that were here on campus in Memphis, Tennessee. Therefore, with [COVID-19] being infectious disease–oriented, there was this consensus of "what do we need to do to help out?" At the same time, internally at St. Jude, there was a need to address this massive lack of knowledge [about COVID-19]. How do we help create the knowledge, but also, how do we facilitate the transfer of information going forward for the pediatric oncology community?
The platform for the observatory was Cure4Kids, which is a St. Jude education collaboration platform. That started at the very end of March . However, knowing that we needed a more robust interaction with our community, the second phase comprised this COVID-19 Observatory and Resource Center [for Childhood Cancer].
The COVID-19 Observatory and Resource Center for Childhood Cancer is a partnership between St. Jude and the International Society of Paediatric Oncology. However, the resource itself has 3 components. One [component] is the Resource Library, which is really a curated area for health care professionals to look at recent publications, recent guidance documents, treatment and diagnosis guidelines, and personal protective equipment—all these things that are very relevant.
That's one part of it. The second part is the COVID-19 Registry itself, which is a de-identified patient registry for any provider to register a patient with pediatric cancer or a bone marrow transplant and COVID-19 that is confirmed by testing. Then, the third component is this Collaboration Space. This is where providers and professionals can interact in a very safe and interactive community. There have been 100 cases registered in the patient registry, and [as of May 2020, we have about] 700 people registered in the Collaboration Space, and just about 6000 users on the page itself.
What data or information are you hoping to get once enough information has been entered into the registry?
The most important thing is the description of the natural history of COVID-19 in the pediatric oncology patient population. We're starting to see some publications in the medical literature of what this looks like, [in the form of] small reports, and single-institution studies. These are more regional kinds of descriptions. However, this is really the broadest approach.
What COVID-19 trends have you observed thus far, either in children who are diagnosed with the virus, or develop an inflammatory syndrome?
The final conclusion is that it's still fairly early to say with certainty what things look like. In the initial reports, it seems that the morbidity is intense. We obviously know that with the pediatric oncology community, with using chemotherapy and being immunosuppressed, we were worried that the disease would be very severe. The initial reports aren't showing us that, but it's still very early, right? Regarding a kind of final concrete conclusion [on COVID-19 in children with cancer], we are not there yet.
Are there any preventive measures that St. Jude has taken regarding COVID-19 that might be helpful to inform the oncology community?
There are questions that we're seeking to answer to some degree through this COVID-19 Observatory and Resource Center for Childhood Cancer. One is, "What does the disease itself look like in the pediatric cancer population? What are the indirect effects of COVID-19 on the health system? How does that apply to pediatric oncology?"
St. Jude Global has always mentioned that 80% to 90% of the burden of pediatric cancer is in low- and middle-income countries. The health system is already stressed to address the burden there, and then we add COVID-19—so what is the effect? It is very early to know exactly what that [effect is].
Again, with the stretch resources, we are hearing some initial reports that less children are getting diagnosed, and that they're presenting [with the virus] later. This is an added barrier that is new, and what that looks like is still in development, but those are the 2 questions that really are up in the air that we're seeking to answer. In adults in Holland, [reports stated that there was] about a 25% decrease in new cancer diagnoses. That's in Holland, but what does that look like in a lower- or middle-income countries in children in whom diagnoses are harder to come by and harder to be finalized, given the health care infrastructure?
What does the evolution of the COVID-19 Observatory and Resource Center for Childhood Cancer look like? Are there any next steps that you hope like to take with it?
At its inception, this was visualized or conceived as a very dynamic platform; it's really about giving the community what it needs. That's really what we're trying to address and work with, for example, in weekly seminars [via webinars]. Yes, it's about getting the experts in panel discussions, but it's about hearing what the questions of the community are. That's what we can consider for [future] sessions, polls, surveys, and say, "Well, we're seeing this phenomenon. Let's try and address that.” Let's create the knowledge to better clarify what that phenomenon is and how do we best get that information to the community that needs it.
With more time, we will have [a larger] patient registry, and we'll have longer follow-up. We'll be able to, to some degree, clarify what the natural history of COVID-19 in pediatric cancer is. We will be able to at least start to disseminate that information as well.
Is there anything else that you would like to highlight?
The important point is, at the beginning of the pandemic, there was a lot of reluctancy to continue with therapy in children with cancer with this fear of causing immunosuppression, as well as causing lymphopenia. Is the disease going to be even more severe? The initial point is that it may not be the case. A lot of the collaborative groups including SIOP, Children's Oncology Group, and St. Jude Global put out a manuscript in pediatric lung cancer to give some insight into these questions on management. Knowing that information is kind of being developed as we speak, and we have to see that as a very dynamic document [for it to be] a dynamic resource for the community.
This article was originally published on OncLive as, "St. Jude Launches Pediatric Global COVID-19 Observatory and Resource Center."