A recollection by Isadora Siqueira, Chief Investigator of the Paediatric Registry Study, on how the ZIKAction team in Brazil adapted to the challenges brought on by COVID-19 in order to carry on with their research and recruitment into the paediatric study.
What impact has the COVID-19 pandemic had on ZIKAction’s study activities and what solutions has your site identified to cope with it?
Brazil is one of the countries most affected by the COVID-19 pandemic and as of March 20th 2021, it had an incidence rate of 5,649 cases per 100,000 habitants, 4,726 cases per 100,000 women, and 1,536 per 100,000 children.
The COVID-19 pandemic significantly impacted the setup of ZIKAction Paediatric Registry in Bahia. The registry is an observational tool collecting information on children during their routine clinical care, who have been exposed to ZIKV and with congenital ZIKV. The registry will provide important information about the clinical characteristics of congenital zika infection, which will help local health professionals with these children’s clinical management. We had planned to implement the recruitment and enrolment of participants and the follow-up evaluations during the participants’ health care assistance, but with the pandemic and closure of health care institutions, we needed to find an alternative way of implementing the study.
Two things facilitated our contact with mothers of children with congenital zika and helped the recruitment process during the COVID-19 restrictions. Firstly, we hired two nurses and one physiotherapist who used to work in health services that offer public rehabilitation to the children. They had already established relationships with most of the mothers and children. They explained the study to these mothers on the phone and offered them the choice to have their children participate. The work that went into opening up recruitment into our registry was a very important activity for our region. Bahia was one of the first and most affected regions during the 2015-2016 microcephaly outbreak, with 696 cases of congenital zika infection confirmed.
Secondly, we had the support of “Abraço a Microcefalia” (Hug to Microcephaly), a community association of mothers with babies born with congenital microcephaly and other zika-related neurological issues. I used to know some of these mothers from previous studies that we conducted in 2016 and one of the nurses from our team volunteers at this association and knows most of the mothers and children. Currently, most of their children are around five years old and when the zika outbreak was ongoing, their children had more access, visibility and care. But over the years, I have witnessed how these mothers have progressively felt forgotten and invisible. They persistently struggle to ensure access to their children’s rehabilitation, a situation that got worse during the COVID-19 pandemic.
What is the legacy of ZIKAction in terms of improving the research capacity at your institution/country for emerging epidemics?
ZIKAction offered an opportunity to work in a coordinated way with diverse groups of researchers from different countries and different expertise, and it also encouraged collaborative work between institutions and countries. The consortium implemented tools and built infrastructure for data collection that could be used in future epidemics. The platform with the registry database will be available even after the end of the ZIKAction project. In addition to this, our team was trained in Good Clinical Practice and General Data Protection Regulation and gained expertise in multicentric studies.
Has your experience in ZIKAction opened up new opportunities for you as a researcher?
As a researcher, the experience of participating in ZIKAction was amazing; it allowed me to work in collaboration with other institutions and countries and be part of a fantastic network of researchers. From this incredible experience, new opportunities are opening up, we are now involved in a recent study on COVID-19 in pregnancy and about to join the ORCHESTRA consortium, where we are going to conduct a prospective study on pregnant women with COVID-19 admitted in a local public maternity hospital, in order to characterize the COVID-19 clinical presentation in pregnant woman and also to identify the adverse outcome of their pregnancies. We are very excited to continue working in partnership with Penta.
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