Schnitzler syndrome

Contact us at: info@schnitzlersyndrome.com

Pages for physicians & scientists:

International Registry

on Schnitzler Syndrome

We have taken the initiative to start an international registry on Schnitzler Syndrome, to collect data on cases of Schnitzler syndrome.

Aims of the registry

Its aims are: to unify and increase knowledge of this disease, to give a comprehensive description of clinical features and further develop diagnostic criteria, to obtain insight in prognosis, to form a central registry for research in Schnitzler syndrome and a database of physicians and scientists interested in Schnitzler syndrome.

Physicians and scientists participating in the registry will be able to get answers from queries for information from this database. If interested, they will also be kept informed of new initiatives about Schnitzler syndrome.

Entering data

To enter a patient for the database, please contact us by email. To promote standardization of data, a questionnaire has been developed which can be used to enter a new case; this will be sent to you. We welcome any additional information you can give us, apart from the questions asked.

Patient data are entered anonymously. Patients can only be traced through contact with their own physician/contact entering the data.  We ask each physician/scientist entering a patient to obtain informed consent from their patient for inclusion of the anonymous data.

In the future, we plan to include an online questionnaire here, and have it for download.

Not a physician or scientist?

To ensure the maximum yield of medical information, we strongly prefer that a patient is entered for the registry by a physician, and not by himself/herself. Patients: we do welcome your input, but please contact your docter to inform him/her and ask for help on the data.

Last update/check: June 30, 2007