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How can our clinic/practice report cases to the registry?

A login with a password is necessary to make a report. The access data will be sent to the head of the participating center after registration. To register you can contact anaphylaxie-register(at)charite.de.

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Which centers are taking part in the registry?

Clinics specialised in Allergology report cases to the registry.

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Which anaphylactic reactions should be reported to the registry?

All severe allergic reactions, i.e., reactions that cover symptoms of the pulmonary tract and/or the cardiovascular system should be reported, regardless of the trigger.

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Is there a minimum age for reporting to the registry?

There is no age-limit for reporting to the registry. Every anaphylactic reaction should be reported, regardless of age.

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Should prior anaphylaxis be reported?

Only reactions which occured within the last 12 months shall be reported.

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Should all of the reactions of a patient be reported?

If a patient repeatedly enters the medical center with serious anaphylactic reactions, then a report should be completed for every reaction, considering that the reactions did not occur longer than 12 months prior.

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Should only patients be registered whose anaphylactic reactions occurred in a hospital?

No. All anaphylactic reactions should be reported, regardless of where they took place. We are, however, not interested in reactions which occur during a provocation test.

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How will online reporting be done?

After log in; please go to the menu item "Questionnaire -> Questionnaire" to open the questionnaire. After completing the questionnaire it is possible to save the form in two variations:

As an "Open/Incomplete Form" or as a "Completed Form."

The saving of an "Open/Incomplete Form" " is recommended if, for example, the diagnostics are running and not all of the information is already available. Post-editing in this saving-variation is possible for 6 months. After 3 months you will receive an e-mail, reminding you that the case needs to be completed. After another 3 months, the case will automatically be saved as unmodifiable.

If all of the required data are available at the time of submission, the questionnare can be saved as a "Complete Case" by clicking "Finalize questionnaire".

Access to the saved questionnaire is possible under the menu item "Questionnaire". Here you can choose between -> "Open questionnaires" and "Closed questionnaires".

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Can a submitted form be changed/corrected?

Only open forms can be changed or corrected. However, if mistakes are apparent in "Closed Forms", we ask you to please contact the ANAPHYLAXIE Team (anaphylaxie-register(at)charite.de).

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Can submitted surveys be viewed?

Yes. The viewing of both open and closed forms is possible under the following menu items upon logging in:

Questionnaire – Open Questionnaires

Or,

Questionnaire – Closed Questionnaires

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Should an allergy assessment take place before a report is submitted?

That would be ideal. But because this is not the case very often, you have the option to save the reaction as an open/incomplete questionnaire. When you have received the missing data the questionnaire can be completed and then saved as "closed questionnaire".

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News

5th International Conference on Anaphylaxis 2019 in Berlin

04.12.2018

Dear friends and members,

It is our pleasure to invite you to the 5th International Conference of the Network of Online Registration for Anaphylaxis (NORA e.V.).

We are going to focus on drug allergy. Drugs are among the most frequent elicitors of anaphylaxis in adults but may even occur in children. Major demands and limitations concern the diagnostics of drug allergy.

Have a look at the...

Publications

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Statistics

1174 completed cases. Last update: 03.12.2018

Male patients 627 53%
Female patients 547 47%
Children and youths184 16%
Adults 990 84%

Including France, Belgium, Luxembourg and Switzerland