Nijmegen periodic fever research group

Hyper-IgD and periodic fever syndrome (HIDS)

Nijmegen HIDS registry

In the Nijmegen HIDS registry, data about HIDS patients are collected. The Nijmegen HIDS registry was initiated in 1992. Its aims are: to collect new HIDS cases, unify knowledge, to give a comprehensive description of clinical features and develop diagnostic criteria, to obtain insight in prognosis, to form a central registry for research in HIDS and a database of physicians and scientists interested in HIDS. At this moment (February 2005), the registry contains data more than 200 patients.

To promote standardization of data, a questionnaire has been developed which can be used to enter a new case. We welcome any additional information you can give us.

 

NOTICE: we have had to remove the online questionnaire because of a spam attack - please use the document that can be downloaded here - we apologize for the inconvenience.

 

You will receive an email from us acknowledging the receipt of the questionnaire - this will also allow you to check the data entered.
If you do not get a response within 48 hours, please contact us.

 

If you prefer a word-document of this questionnaire to send as an attachment to an email or print-out and fax or mail, go here to download.

 

 

REMARKS

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

 

Last update: February 11, 2006