Old Registry and Statistics

1. What is the ESID Test Registry?
2. How do I log on to the ESID Test Registry?
3. How do I log on to the Registry proper?
4. What requirements are necessary to become a documenting centre?
5. Where is the data stored?
6. How long will the data be stored?
7. Who else can see the data I enter?
8. Can I see data entered by other people?
9. Can the sponsors of the database see any of my data?
10. To whom does the data in the registry belong?
11. What is a National Registry?
12. Why are some diseases in the menu coloured blue and others black?
13. Why are there red, black and blue fields in the database?
14. What is a visit date?
15. How do I add a new visit date?
16. What do I do when an entry is missing in a pull-down-menu?
17. How do I enter several medications for one patient?
18. How do I document a change of therapy for a patient?
19. How do I change lab units?
20. How do I enter lab values which are not in the Core Laboratory?
21. What does the “?” in the ESID Database mean?
22. What are ICD-10 codes?
23. How do I enter ICD-10 codes?
24. Why are the buttons in the database not working?
25. Who do I ask if this page doesn’t answer my question?
26. What are the differences between the present database and the new personalised version?
27. How do I change to the personalised ESID database?

1. What is the ESID Test Registry?
The Test Registry is a demo version of the ESID Online Database for primary immunodeficiency diseases that may be accessed by anyone. It does not contain real patient data, but data can be entered for testing. You can reach the Test Registry here.

2. How do I log on to the ESID Test Registry?
The user name for the Test Registry is “test”. The password is always “start”. Please do not change the password after logging in, even if the system asks you to. Instead, just close the box.

3. How do I log on to the Registry proper?
For the real registry, you need a personal user name and password. You may receive this only after an agreement has been signed between your institution and ESID and you have sent us a password application form co-signed by the head of your department. Note this password is different to the ESID website password necessary to access the members-only section of the website for voting etc.

4. What requirements are necessary to become a documenting centre?
After signing an agreement with ESID, you need to get a data protection or ethics approval (or both) to participate from the local authorities. Before documenting a patient’s data, you must have an informed consent from the patient. Please use the consent forms provided on our website in most European languages.
In addition, documenting centres from outside the EU have to complete an EU standard contract. Please contact us at [email protected]  or more details.

5. Where is the data stored?
The data is stored on secure servers inside the firewall at Freiburg University Medical Center, Germany.

6. How long will the data be stored?
The data is being stored for an indefinite period of time. This means that long-term documentation is possible even over several decades.

7. Who else can see the data I enter?
Only other users from your centre or the national registry can access your data. In addition, certain member companies of the PPTA (Plasma Protein Therapeutics Association) – currently Baxter, Biotest, CSL Behring, Grifols, Kedrion, Octapharma and Talecris – who are the sponsors of the database, can view the “red fields” of your patients’ data, if the patients have given their consent. However, they only see the region of residence, not the country, so that they cannot trace back the patients to your centre. In addition the data is further coded in that the patient IDs they see are different to the real ones.
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8. Can I see data entered by other people?
You may only access the data entered by other people from your centre or national registry. You cannot see the data from other centres. If you wish to have access to other centres’ data for study purposes, you will first have to contact the ESID Database coordinator under [email protected] . He will then put you in contact with the potential cooperation partner. Once you have signed an agreement with that centre, the data agreed upon may be made available to you.
(See collaboration guidelines in the Studies section for details)

9. Can the sponsors of the database see any of my data?
Yes, member companies of the PPTA (Plasma Protein Therapeutics Association) who are the sponsors of the database, can view the red fields of your patients’ data.
However, they cannot identify individual patients. The data is further coded in that the patient IDs they see are different to the real ones. In addition they only see the region of residence, not the country, so that they cannot trace back the patients to your centre. If a patient opts to not consent to this, his or her data will not be available to the sponsors. .

10. To whom does the data in the registry belong?
The data belongs to the patient but for purposes of the ESID database, it is “owned” by the documenting centre or national registry that enters the data.

11. What is a National Registry?
A national registry is a network of centres in one country that has decided to join the ESID database as a whole. A national registry is represented to ESID by one main centre that coordinates the work within the national registry.
National Registries may opt to use the ESID Database platform to register their patients or may have their own platform.
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12. Why are some diseases in the menu coloured blue and others black?
The diseases coloured in blue contain specific data models (disease-specific subregistries) with lots of additional fields relevant for the disease in question. The diseases coloured in black only contain the Core Dataset common to all diseases.

13. Why are there red, black and blue fields in the database?
The red fields in the database are the most relevant fields for PID and should be documented for every patient. Black fields represent additional information that can also be filled in.
Fields in other colours signify relevance for a particular study-they should be completed by participants in that study.

14. What is a visit date?
A visit date defines the date on which a patient attends the clinic and is the date you refer to when entering data. For example, if a blood sample for Ig values was taken on January 22nd 2004, you would enter 2004-01-22 as the visit date and then enter the Ig levels.

15. How do I add a new visit date?
You can add as many visit dates as you like by clicking on the plus sign next to the visit date box:

16. What do I do when an entry is missing in a pull-down-menu?
If there is a “+” next to the menu, you can add new entries by clicking on that.

If there is no “+” , please send a request to [email protected]  explaining which entry you need and why it is necessary.
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17. How do I enter several medications for one patient?
The field called “Therapy” is extendable. This means that you can add as many medications as you like. After submitting one drug, all medications will be displayed as a list and a new drug can be added.

18. How do I document a change of therapy for a patient?
First, you have to put a stop date for the old medication into the corresponding field. Then, you add the new medication on top of the list. This also applies to a change in dosage.

19. How do I change lab units?
The lab units are preset to standard international units. If you are using different units in your centre, you must change the preset values on the page called “Normal Ranges”. This can only be done by the person at your institution who has rights as a “centre administrator”.
The change of the units on the “Normal Ranges” page will be effective for all diseases in the database.

20. How do I enter laboratory values which are not in the Core Laboratory?
You can add lab values only for the diseases with additional disease-specific subregistries (marked blue in the menu). There, you should click on “Core&Extended Laboratory” where you will find a field for additional laboratory values.
The first pull-down menu in this field, called item, gives you a list of lab values to choose from. You can also enter new items if you do not find what you are looking for.

21. What does the “?” in the ESID Database mean?
This sign is shown next to many fields and indicated that there is a “tool tip” available. If you click on the “?” , a new window will open with information on what to enter in this field.

22. What are ICD-10 codes?
ICD-10 is the current version of the International Classification of Diseases which is maintained by the World Health Organization. Using this code, we make the data comparable internationally.

23. How do I enter ICD-10 codes?
In order to simplify the usage of the ICD-10 codes, we have integrated a code finder (“ICD-10 wizard”) in our database. If there is an ICD-10 field to be filled out, you should click on the “+” next to the field. The wizard will pop up in a new window.
The wizard will ask you to enter a search string, e.g. “pneu”. It will then give you a list of entries containing that string which you can choose from. After that, the database automatically enters the chosen text and code into the corresponding fields.
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24. Why are the buttons in the database not working?
This may be due to different reasons:
a) You are using a browser which is not fully compatible with the system: To use the database you should use the latest version of one of the following browsers: Mozilla Firefox (recommended), Internet Explorer or Safari.
b) Incompatible browser settings: If you newly install a browser, the standard settings will work with the system. If you have already installed one of the above browsers and the buttons or any other part of the system does not work, please make sure that the following options are enabled in your browser configuration:
-JavaScript: The systems depend largely on JavaScript for user interaction and validity checks. If JavaScript is not supported, large parts of the systems do not work, particularly the buttons in the top panel of the application.
-Cookies: Cookies are used for setting up a secure user session within the application. Cookies do not harm your system, since these are only text files holding special information like IDs or any other text-based information. The cookies within the ESID system only store IDs so that the application knows that you are in a consistent user-session. Nothing is tracked there and the cookies are deleted when you log out or close your browser. If cookie usage is disabled, the application will not work.
If you have questions regarding the configuration of your browser, please contact your local system administrator.

25. Who do I ask if this page doesn’t answer my question?
Please send an email to [email protected]  or call +49 761 270 3445.

26. What are the differences between the present database and the new personalised version?
The new personalised database is different to the present one in that patient names and other personal information can be stored in the database. This makes it easier to locate a patient in the database when updating his medical details. You no longer need to keep a reference table indicating which ID number belongs to which patient. The personal data is stored on a separate server to the medical data. A third sever provides access to these two servers to authorised users only. Data viewed by other centres (when permission is granted) is avaliable only anonymously. Thus this database conforms to data protection laws.

27. How do I change to the personalised ESID database?
You have to complete the form “Application for the switch to the personalised version of the ESID online Database for existing documenting centres” and send it to Dr. Gerhard Kindle, Head of the Registry, in Freiburg. In addition you have to inform your local data protection and ethics authorities about the change in system. A technical description of the new version of the database is available on request from [email protected] .