Participate in the study to discover the effects of COVID-19 in people with rare diseases
Do you have a rare disease and have had or currently have COVID-19? If so, join the study and participate in the research!
Share4Rare presents a new investigation initiative coordinated with the Garrahan Hospital in Buenos Aires and the Sant Joan de Déu Hospital in Barcelona. The goal is to create an international registry of patients with rare diseases and that are or have been COVID-19 positive. The registry is addressed to patients of all ages, including those who still not have a conclusive diagnosis of their pathology.
Description of the Study:
- Title: Registry to Better Understand how COVID-19 Affects People with Rare Diseases.
- Principal Investigator: Marcelo Andrade.
- Co-investigators: Guillermo Chantada, Begoña Nafría.
- Study Population: The registry is open to patients of all ages living with a rare disease and who have tested positive for SARS-CoV-2 infection.
- Method: The information will be collected through a series of questionnaires addressed to the patients.
Objectives of the Study:
Principal Objective: a new patient registry to better understand how COVID-19 affects people with rare or undiagnosed diseases. The registry will collect information on patients with rare diseases and with a positive diagnosis for COVID-19. This will help improve the general knowledge of this new disease and its evolution and prognosis in these patients.
More about this Study:
Scientific Context: People with rare diseases are more vulnerable to COVID-19 than the general population because many of these pathologies put patients’ health at a higher risk during a SARS-CoV-2 infection. Currently, we know little about how this new infectious disease affects people in general. However, we know even less about its effects on people with unknown rare diseases. Because of this, it is highly important to study the impact of COVID-19 on people who suffer from rare diseases. Thus, we encourage you to join this study if you can!
Share4Rare is a digital platform designed to facilitate research in rare diseases by connecting patients, physicians, and investigators and collecting their experience. At the same time, this platform aims to create a global community to accelerate knowledge of rare diseases. Moreover, the patient can register to participate in different studies from their webpage.
Participant institutions: on the one hand, the Hospital Sant Joan de Déu of Barcelona, which is a private, non-profit institution with a vocation for public service. Moreover, it is a member of the Hospitaller Order of Sant Joan de Déu. On the other hand, Hospital Garrahan, which is the reference pediatric center in free, high complexity, public health in Argentina.