New registry to better understand how COVID-19 affects people with rare diseases
In the current global pandemic due to COVID-19, patients affected by a rare disease are a doubly vulnerable group: on the one hand, many of the rare pathologies put patients at a higher risk of infection by SARS-CoV-2, and on the other, confinement and lack of medical care due to the saturation of certain health services is delaying the treatment of these pathologies, which in many cases are very serious or chronic.
In this context, the Share4Rare platform, coordinated by Sant Joan de Déu Research Foundation and Sant Joan de Déu Barcelona Children’s Hospital, has created a new registry for people who live with a rare disease or without a defined diagnosis and who have been confirmed to have a SARS-CoV-2 infection. The initiative has been launched in collaboration with Garrahan Hospital, the Argentinian reference centre for rare pediatric diseases. This registry of patients with rare diseases that have gone or are going through COVID-19 will help to improve the general knowledge of this new disease and its evolution in these patients. The registry data will be of great help to professionals who are in the first line of treatment for these patients in these times of global pandemic.
The registry will be built thanks to a series of questionnaires that will collect information from patients who suffer from a rare disease and who have had — or still have — a SARS-CoV-2 infection. In order to participate in the registry, you must be registered in Share4Rare. If the patient is a minor, the questionnaires can be completed by the parents, caregivers or legal guardians. A questionnaire for clinicians will also be launched shortly.
This registry provides a great opportunity to improve our knowledge of COVID-19, its evolution and its effects in patients with rare diseases. Currently there is no such a global registry addressed to the community of people affected by rare diseases and who suffer or have suffered from COVID-19. Let's change this!
If you have any questions or doubts about the registry and you would like to participate, write an email to firstname.lastname@example.org. If you wish to participate but you are not yet part of Share4Rare, you will be asked to register in the platform before accessing the questionnaires. Finally, if you are already a user of the platform you will receive a notification as soon as the questionnaires are active. Together we can boost rare disease research!