Data integration is the starting point of a collaborative knowledge platform associated with childhood nephrotic syndrome in Brazil.
One of the first projects of the Network is to know the epidemiological data of Nephrotic Syndrome (SN) in childhood in Brazil, and as an instrument for this purpose an online registry of children with this pathology was created.
From this registry, which should bring epidemiological data of great importance to both physicians and health managers, much information can be used for new projects that meet the objectives of the network. From this same registry will be selected patients for conducting genetic research (exoma sequencing) for the diagnosis of NS. In the long run we aim to perform the molecular analysis of all children with NS. The results of the exome sequencing will be delivered analyzed to the physician responsible for each patient studied.
How to Participate
The Registry is open to all clinicians and scientists who wish to contribute information from patients with NS. Demographic, clinical, and genetic data from this registry will contribute to a better understanding of the disease and better patient care.
Participating in Rebrasni YOU can help in the search for better treatments and the possible cure of this disease. Data from one child can impact the improvement of thousands.
In order to register patients with NS, the responsible physician must first register online and then register the patients.
You will only use a few minutes filling out the online form and may need some data at hand. The more detailed your information, the greater your contribution to research.
The doctor's registration will be important to create your contact with the Network. Patient data will be collected through a simplified form and a complete form. The simplified form is mandatory and the completed form is initially optional and supplementary data may be requested according to the study in question.
After completing the form, the donated data will be reviewed and there will be no identification of the patients or physicians involved.
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Your participation is completely voluntary.