You are interested to join the chronic urticaria
registry (CURE)? All urticaria treating physicians and centers are
highly welcome to contribute to this important effort. However,
before you can start entering data into the registry some steps
need to be taken:
- You need to date and sign a collaboration agreement with the
urticaria network e.V. (UNEV) that is hosting CURE.
Here,
the collaboration agreement template can be downloaded.
Here,
the CURE project plan can be downloaded (ANNEX 1 of the
collaboration agreement).
Please complete the collaboration agreement and send one copy
to:
PD Dr. med. Karsten Weller,
Dpt. of Dermatology and Allergy
Charité – Universitätsmedizin Berlin
Charitéplatz 1
10117 Berlin (Germany)
- You need to obtain approval for taking part in the CURE
registry from your responsible ethics committee (institutional
review board - IRB) and your responsible data protection
officer/unit. Although, ethics approval is available for the
Charité (No. EA1/146/14) this is not universal, i.e. not valid
for other locations. Please also note that the requirements
regarding approvals for participation may vary from site to
site. In case of any doubt, please check with your institution,
which approvals are needed for your participation.
In order to facilitate the obtaining of approvals, you can find
here
a template for ethics submission (please check before
using it if all information is correct for your center or if it
has to be adjusted for your center), the CURE patient
information as well as the CURE written informed consent form.
For already available language versions of templates of the CURE
patient information and CURE written informed consent form,
please check here:
- After a signed collaboration agreement is in place and after
regulatory approval is obtained, please send a scanned copy of the approval to
cureoffice(at)urtikaria.net. Subsequently, the administrator of
the registry will send you your login information and you can
start entering data into the registry. You are directed to the
data entering mask by clicking one of the links on this web
page, e.g. the registry icon on the home screen.
- For more information on the International Steering Committee
(ISC) of CURE and on the publication policy of CURE, please see
‘Committee’ section of the website or download the current CURE
ISC Charter, which is updated in regular intervals: CURE
International Steering Committee Charter
- In order to collect all important information from urticaria
patients during their consultations as well as to collect all
relevant data for CURE, the below provided baseline and follow
up patient questionnaires may be applied to patients before or
during their routine visits. Alternatively, the below provided
physician checklist covering the same data may be used by the
urticaria treating physician during the patient consultation.
The idea of these documents is to support the urticaria treating
physicians to perform a structured patient history that includes
all relevant and EAACI/GA²LEN/EDF/WAO-guidelines suggested
contents.