International registry of COVID-19 infection in uncommon diseases paediatric ages, adolescents and adults
How does COVID-19 infection evolve in pediatric patients with rare diseases? Currently there is no registry on this topic.
- The evolution of COVID19 in pediatrics is fairly unknown.
- People affected by rare diseases constitute a risk group, highly vulnerable to any additional disease.
- Contracting another disease can mean the appearance of comorbidities and/or unexpected complications for these people.
- Currently there is no registry of people with rare diseases who have suffered from COVID19.
What are our main questions?
- Are people with a rare disease a risk group for COVID19?
- How does COVID19 develop in these people? What symptoms do they present?
- What is the longterm impact of COVID-19 on people with a rare disease?
- What are the best telemedicine tools for managing these patients?
The survey will collect information on the underlying disease, the presence of comorbidities and data on the COVID-19 infection in an anonymized form, through a web platform in a secure environment. The questionnaire will include pediatric and adult patients who have or have had a duly documented infection with COVID-19 and any disease regarded as uncommon or without a diagnosis.
The survey is accessible to adult patients and pediatric patient caregivers using the Share4Rare online platform. To participate, it is necessary to register on the platform and complete the informed consent document.
- Create an international registry with identified data on the evolution of COVID-19 infection in pediatric patients with rare diseases.
- Make the information generated by the registry available to researchers, in order to facilitate decision-making by the treating teams.
Data protection and samples
Information provided by adult patients and/or caregivers of pediatric patients is reported in a safe and private setting.
The participants will be recruited by carrying out different dissemination actions, and also with the participation of the people who are part of the Share4Rare platform.
A network of excellence. International institutions
SJD Barcelona Children's Hospital
Hospital Garrahan, Buenos Aires (Argentina)
FADEPOF (Federación Argentina de Enfermedades Poco Frecuentes)
ALAPA (Alianza Argentina de Pacientes)