Thank you for your interest in helping with this international effort! Healthcare providers, please report on the SECURE-VA registry, if any of your patients with vascular anomalies contract COVID-19.
An example of the form to be completed by a healthcare professional caring for a patient with vascular anomalies with documented COVID-19 is available for reference.
The SECURE-VA registry is collaborative effort, and healthcare providers around the world are encouraged to report to this registry. Below is a list of frequently asked questions.
Frequently Asked Questions
The goal of the SECURE-VA registry is to report on outcomes of cases of COVID-19 in patients living with vascular anomalies. The data will be shared directly on this website, through social media, and via scholarly publications. The website will be updated at least weekly and include the number of COVID-19 cases and outcomes in this population of patients, demographics, medical history, COVID-19 disease severity, symptoms, and locations.
The Committees for the Protection of Human Subjects at Children’s Hospital of Philadelphia have determined that the collection of this data meets the exemption criteria as defined under federal regulations [45 CFR 46.104(ii)] and does not require IRB approval.
The REDCap database provides for secure web-based data entry with the data stored on secure servers at Children’s Hospital of Philadelphia. All data is encrypted during transmission. The web and database servers are monitored by the IT staff, patched frequently, and scanned by a third-party vendor to ensure that they are protected against known vulnerabilities. Access is by individual user and is restricted to the forms and/or functions that the user needs to have.
Healthcare providers or reporters on behalf of the providers taking care of patients with vascular anomalies and documented COVID-19 infection should fill out the form.
If you have a patient with a vascular anomaly and confirmed SARS-CoV-2/COVID-19 testing, please complete the form after the patient has had COVID-19 for a long enough duration to experience partial or complete recovery, hospitalization, or death.
Patients with vascular anomalies and documented COVID-19 infection should encourage their healthcare provider to complete a case report form on their behalf.
It will take approximately 10 minutes to complete the survey.
Once a survey has been submitted, it cannot be re-accessed or edited at a later time. However, if you have updated information or any changes since you have reported a case, please re-report the case and email email@example.com to ask our team to remove the duplicate entry.
Thank you for your interest in helping with this international effort! Please consider asking your healthcare provider to report on this website, if you or any of their patients with vascular anomalies contract COVID-19. Check the website for weekly updates.
The study team is unable to answer any medical questions or provide any medical advice. Consult with your healthcare provider regarding any personal medical questions.
The study team currently does not have the infrastructure to accept patient samples. However, please stay tuned for updates, as they may consider collaborating with others conducting studies with biological samples in the future.
Yes. The SECURE-VA registry is a collaborative, international effort, and healthcare providers around the world are encouraged to report to this registry.
With users reporting cases in real-time, the study team hopes to quickly identify the impact of COVID-19 on patients with all types of vascular anomalies and understand the impact of risk factors such as genotype, prior vascular anomaly complications, or vascular anomaly disease-related medications, on health outcomes.
The study team hopes these data are informative and increase understanding of the care of vascular anomaly patients with COVID-19.
The study team accepts only confirmed cases at this time to ensure that the data collected is reflective only of true COVID-19 cases. The main reason for this decision is that suspected cases may include cases of non-COVID-19 illness, including other viral illnesses or allergy. The study team recognizes there are limitations to this approach, including the scarcity of testing at many locations and the possibility of a false negative COVID-19 test.
The study team plans to update the website weekly with reports on the number of cases, outcomes, patient history, treatment, etc.
Denise Adams, MD, co-director of the Vascular Anomalies Center at Boston Children’s Hospital, and Kristen Snyder, MD, Interim Director, Complex Vascular Anomalies Frontier Program at Children's Hospital of Philadelphia, are leading this project.
Please direct questions to firstname.lastname@example.org.