Creutzfeldt-Jakob disease surveillance
Creutzfeldt-Jakob disease surveillanceWelcome to the technical documentation pages for the project "Creutzfeldt-Jakob disease surveillance (CJD)", provided by the service healthdata.be (Sciensano).
These pages provide information about the technical processes of the project. The following sections are (will be) provided:
- General project information
- The data collection
For scientific information of the project, please contact the primary organization that oversees implementation of project (see section "General project information").
This documentation is being updated regularly. We try to provide as correct, complete and clear as possible information on these pages. Nevertheless, if you see anything in the documentation that is not correct, does not match your experience or requires further clarification, please create a support ticket via our portal (https://healthdatabe.atlassian.net/servicedesk/customer/portals) or send us an e-mail via support.healthdata@sciensano.be to report this documentation issue. Please, do not forget to mention the URL or web address of the page with the documentation issue. We will then adjust the documentation as soon as possible. Thank you!
General CJD project information
General CJD project informationProject name
Creutzfeldt-Jakob disease surveillance
Project abbreviation
CJD
Project code
HDBP0040
Primary organization that oversees implementation of project
- Sciensano
Partner organization participating in project
- Not available
Organization that commissioned this project
- Not available
Organization providing monetary or material support
- National Institute for Health and Disability Insurance (RIZIV-INAMI)
Brief project description
In 1998, following the detection of variant Creutzfeldt-Jakob disease (vCJD) in the UK, Belgium installed a surveillance system for Creutzfeldt-Jakob disease (CJD). The objectives of this system were to identify vCJD cases and detect increases in CJD incidence. Diagnostic confirmation of CJD is based on autopsy after referral by neurologists. Reference centres perform autopsies and report to the surveillance system.
The CJD data collection
The CJD data collectionOrganizations and/or individuals that provide data
Seven academic centres of neurology/neuropathology are appointed as CJD reference centres
Start date of the data collection
16/12/2019
End date of the data collection
Ongoing
Periodicity of the data collection
Yearly
The CJD Data Collection Definition (HDBP0040)
The CJD Data Collection Definition (HDBP0040)In the file below you can find the Data Collection Definition (DCD) specifications of the project CJD. It is a detailed description of the content of one DCD with field names, formats, values, validation rules, help texts, error messages, translations... These specifications were used to build the forms, csv's, and API's for this project, which you also can find in this project manual.
This documentation is being updated regularly. We try to provide as correct, complete and clear as possible information on these pages. Nevertheless, if you see anything in the documentation that is not correct, does not match your experience or requires further clarification, please create a support ticket via our portal (https://healthdatabe.atlassian.net/servicedesk/customer/portals) or send us an e-mail via support.healthdata@sciensano.be to report this documentation issue. Please, do not forget to mention the URL or web address of the page with the documentation issue. We will then adjust the documentation as soon as possible. Thank you!
The CJD dataflow description
The CJD dataflow descriptionBelow we describe (high level) the CJD dataflow between the data provider and the healthdata.be platform.
Step 1. (Automatic) data export from systems of data provider towards HD4DP v1 and prefill of forms if not complete.

Step 2. Manual registration (de novo or completion) of data in form component of HD4DP v1.

Step 3. Transfer of patient identifiers and registry data from HD4DP v1 towards eHBox messaging client of HCO (HCO UM/EM)

Step 4. Transfer of patient identifiers and registry data from eHBox messaging client of HCO (HCO UM/EM) towards TTP service of eHealth.

Step 5. Transfer of pseudonymized patient identifiers and registry data from TTP service of eHealth towards eHBox messaging client of HD (HD UM/EM)

Step 6. Transfer of pseudonymized patient identifiers and registry data from eHBox messaging client of HD (HD UM/EM) to HDRES v1

Step 7. Transfer of pseudonymized patient IDs and registry variables from HD4RES v1 towards Data Validation environment on HD DHW.

HD4DP v1
HD4DP v1 johanvanbussel Wed, 06/19/2024 - 00:10General description of the application HD4DP v1
General description of the application HD4DP v1HD4DP v1 is a local application developed by healthdata.be (Sciensano) and installed on the IT infrastructure of your organization or on the one of your partner organization. The application allows you to extract data from the primary system and map that data into one or more data collection projects.
The local HD4DP v1 application is accessible via a web browser, such as Internet Explorer or Chrome. The link is specific in each organization based on the server on which the application is running.
Fields that cannot be completed with the data from the primary systems, can be answered manually in (‘prefilled’) electronic forms after the CSV upload.
Once the registrations are complete, the data can be transferred towards the central data platform healthdata.be. For this transfer, HD4DP v1 connects with the ehealth messaging software of the data provider.
The access to the HD4DP v1 application is described here.
User manual of the application HD4DP v1
User manual of the application HD4DP v1A comprehensive user manual, for both participating healthcare organizations and their IT service providers, is available on this HD documentation portal: https://docs.healthdata.be/hd4dp-v1.
Request account for HD4DP v1
Request account for HD4DP v1To access the HD4DP v1 application, you need an account, a username and a password. If you do not have an account, you can request one by following the steps below. If you have an account, follow the instructions under “Sign In” at the end of this page.
- Open the link for the HD4DP v1 application. You will see the screen below.
Please contact your IT department to obtain the link of the HD4DP v1 application on the server of your organization. In case you could not be further helped, you can contact healthdata.be at support.healthdata@sciensano.be to get the link. The link is specific in every organization based on the server on which the HD4DP application is running.

- Click on the Request account link on the login page.
- Fill out the request form:
- Enter a username, first name, last name and e-mail address
- Select the organization and data collection(s)
- Fill in the Requester e-mail field if a person requests an account for a third person
- Submit the request using the Request button

- Confirmation e-mails are sent to the person for whom the account was requested as well as the requester, if the field "Requester e-mail" was filled.
- The approval or rejection for the user account is confirmed by mail. Depending on your organization, this could take a few hours.
- This action will be done by an HD4DP v1 administrator in your organization
- The confirmation mail will include all the necessary information to log in
Sign in
Logging in to the HD4DP v1 application is done in 3 steps:
- Enter your username and password in the appropriate fields
- Select the correct organization
- Click on "Log in"

Create a registration in HD4DP v1
Create a registration in HD4DP v1The Registrations tab shows the user the available registries. A user can start collecting data from this view.
Creating and submitting a registration consists of 4 steps:
- Select the registry for which you want to create a registration.
(The documentation below includes generic sample screens designed solely to illustrate what the process entails, irrespective of the registry involved.)

- Click on "New registration" button.

- Fill in the registration form and save or submit the registration with the buttons below.

- Save the registration temporarily if needed. The status of the record will be "Open" for saved registrations.

- Submit the registration if no validation errors present. The status of the registration will change to "Sending".

- When the record has been processed, the status will change to "Submitted".

As soon as a registration is sent, the "status confirmation" column will show "Pending".
- It shows "OK" once the registration has arrived, and "NOK" if the registration did not arrive within 48 hours. If the status is "NOK", the software will automatically try to resend the registration up to 10 days after the initial submission.
- For the statuses "Sending","Corrections needed" and "Approved" the status confirmation will be empty because the registration has not yet been submitted.
- A registration can be "Reopened" if needed as long as the status of the registration is "Submitted".
Change a registration in HD4DP v1
Change a registration in HD4DP v1A user can modify and complete a registration in four steps:
- Select the register from which you wish to modify one or more registration(s).
(The documentation below includes generic sample screens designed solely to illustrate what the process entails, irrespective of the registry involved.)

- Click on the registration to be changed, and complete the form. The status of the record is then:
- Open for registrations saved manually or by uploading a csv file
- Corrections needed for registrations with errors

- Save registration temporarily if necessary. Record status becomes Open for stored registrations.

- Send the registration if there are no more validation errors.
- Registration status changes to Sending

- When the record is processed, the status changes to Submitted.

Once a registration is sent, the message Pending appears in the status confirmation column.
- When the registration is received, the message OK appears; if the registration is not received within 48 hours, the message NOK appears. With the status "NOK", the software will automatically try to send the registration up to 10 days after the initial submission.
- For the statuses Sending, Corrections needed and Approved, the status confirmation is empty because the registration has not yet been sent.
- A registration can be Reopened if necessary, as long as the status of the registration is "Submitted".
Delete a registration in HD4DP v1
Delete a registration in HD4DP v1Only registrations with status Open or Corrections needed can be deleted.
The following steps are required to delete the registration:
- Select the record and version for which you wish to delete a registration
(The documentation below includes generic sample screens designed solely to illustrate what the process entails, irrespective of the registry involved.)

- Select the registration(s) you wish to delete
- Select the Actions button and select the Delete registrations option

- Select Yes to confirm

Technical manual of the application HD4DP v1
Technical manual of the application HD4DP v1 Bart.Servaes Wed, 06/26/2024 - 17:30Create a csv for HD4DP v1
Create a csv for HD4DP v1Processing registrations in bulk is done by uploading CSV files. These files are plain text files which can contain multiple registrations at once and are extracted from your primary system.
The first step is to create the file correctly.
Using a CSV editor
While Excel is a fine tool to view CSV’s, we do not recommend it to edit CSVs. Instead use notepad++ or any other text editor. Here are a few risks you should be aware of when editing a CSV in Excel. Excel will interpret the content, which may lead to changes:
- Leading zeros disappear in fields that are recognized as numeric fields
- Entries like 3-9 can become March-9
- The only accepted date format DD/MM/YYYY can be modified (e.g. To DD/MM/YY)
- The decimal separator can differ from that in HD4DP, a semicolon wil lead to a correct upload
- When saving a file as .csv, Excel uses the default field separator. HD4DP only accepts CSV with a semicolon as separator. This default setting can be adapted in the properties of your computer.
- CSV encoding must be in UTF-8.
Setting up the document
Every column in the CSV file needs to be recognized as a field of the register by the HD4DP application. Therefor each column in the file must be identical by the technical name of the field in the register.
Tip: Downloading (manually) entered data from HD4DP will guide you in formatting a CSV file and may help during the development of the CSV extraction from the primary systems.
The Data Collection Definition (DCD) specifications for a register and its fields are defined and documented on this documentation portal.
Each field in the form can be completed through a value in a CSV file.
An example field is “Date of last follow-up”, shown in the screenshot below.

This field is of the type “date” and is required (*). Within the technical documentation of this data collection, this is shown as follows:

To include this field in a CSV upload file, it is sufficient to create a column with the name “date_of_last_followup” and populate it with the appropriate data i.e. a date in the format dd/mm/yyyy.
Fields can be required, read-only and computed (automatically calculated). Fields can also have a default value.
This information is present in the detailed technical description for each data collection.
General requirements
- The OpenCSV standard is used
- The column separator is the semicolon (;)
- Fields with semicolons are surrounded by double quotes (abc;"first; second";123)
- Double quotes inside a field are preceded by a backslash or a double quote, and the whole field is surrounded by double quotes (abc;"quote1: \", quote2: """;123)
- Backslashes inside a field are preceded by a backslash, and the whole field is surrounded by double quotes (abc;"first\\tsecond";123)
- The decimal separator for numbers is the comma (,)
- The date format is dd/mm/yyyy
- Special Unicode characters are provided as-is: (abc;=+Éçüßéèö;123)
Basic content types
Depending on the type of the field, a different representation of the data is expected. The table below describes the different basic types and the rules on how to provide the content for these types.
| Content type | Expected format/content |
| boolean | TRUE, FALSE |
| date | dd/mm/yyyy |
| choice | code from choice list |
| list | option1_label|option2_label|etc. |
| multiline | free text |
| number | number (decimal separator = ,) |
| patientID | SSIN number. If the person does not have a SSIN, leave this field blank. |
| questionnaire | code from questionnaire answer list |
| text | ● free text ● if a binding reference list is used: a code from the reference list ● if a non-binding reference list is used: a code from the reference list or free text |
| attachment | ● expected format/content: Name of the file that must be attached (e.g. protocol.txt). ● expected extension: .txt ● file must be stored in the same folder as the folder that is used for the CSV-upload |
Advanced content types
Other than these simple types, more complex data structures can be used, as shown in the table below. Each of these types is explained in more detail below the table.
| Content type | CSV column name | Expected format |
| fields within fieldset | fieldset_label|field_label | depending on the field type |
| list (1 field) | list_label|field | value1|value2|etc |
| list (block of fields) | list_label|0|field1 list_label|0|field2 list_label|1|field1 list_label|1|field2 etc. | depending on the field type |
| nested fields below choice or multichoice | choice_label|nested_item | depending on the field type |
Fieldset
A fieldset is a collection of fields, as shown in the image below:
Anthropometry is the title of the fieldset, and this fieldset contains two fields, weight and height. Fieldsets do not have a number cfr. image below - Anthropometry.

Sections do not have an impact on the CSV file, whereas fieldsets do. The title of the fieldset must be included in the field name column as follows: fieldset_label|field_label.
E.g. for the two Anthropometry fieldset fields weight and height below, the correct CSV column headers are: anthropometry|weight en anthropometry|height.
Lists
A list is also a collection of fields, like a fieldset, but with the additional property that the collection of fields can be repeated.
An example is shown in the image below: “Birthdays of the biological children for this patient” is a list. One list item consists of two fields, “Child birth month” and “Child birth year”. For each child, a list item can be added.
The CSV column names consist of the list header label and the field label (as for fieldsets), together with a counter to distinguish the different list items. The correct CSV column names for the two list items below are:
- birthdays_of_the_biological_children_for_this_patient|00|child_birth_month
- birthdays_of_the_biological_children_for_this_patient|00|child_birth_month
- birthdays_of_the_biological_children_for_this_patient|01|child_birth_month
- birthdays_of_the_biological_children_for_this_patient|01|child_birth_year
Please note that for every line, the numbers should increment, starting from 0 (|00|,|01|, .. is ok, |01|, |03|, ... is not). You can't have blank values for |00| and filled values for a higher number.
Please note that the numbering requires a stable format, meaning the number of characters used by the number has to be constant. You can't have one record using |00| and another using |0|. Generally we advice to use a string length of 2 digits.

For lists consisting of 1 field a simplified implementation is possible. The CSV column header only consists of the list header label and multiple values are provided in the one column, separated by a pipe (|).
E.g. for the list in the image below, the CSV column header is diagnosis_orphacode and the content of the column is 562|702. This is the example of a text field with a reference list: providing the codes of the reference list is sufficient.

Nested fields
Nested fields are fields that only become available when specific options are selected in the form. An example is shown below: the field “Specify” only becomes available if the checkbox “Other” is marked. These fields also have a combined CSV column header, consisting of the choice list label and the field label. For the example below, the correct CSV column header is hence base_of_diagnosis|specify.

Attachments
When a CSV is prepared and put in the provisioning folder, it can contain references to attachments for data collections that specifically allow this.
These references are relative paths to the file location. If such a reference is present in the CSV file, the attachment content is uploaded and linked to the created registration. The attachment is then available in the HD4DP client as well as in the HD4RES client when the registration is submitted.
The maximum file size for attachments is 6 MB.
If a data collection permits you to send attachments you should have the column name to use in the CSV. If not, you should be able to find it at https://www.healthdata.be/dcd/#/collections or you can contact Support.Healthdata@sciensano.be.
Add the column name to the header of the CSV and add the file names as values in the column.
Example: “picture.png”
Put the CSV file in the correct provisioning folder (organization sub folder, then in the register sub folder), along with a “picture.png” file of your choice. The application picks the CSV file and creates a new registration.
Open the registration and verify the attachment has correctly been uploaded.
CSV download and upload for stable data
CSV download and upload for stable dataBefore starting a new data collection based on stable data of another data collection, you need to finalize the data collection which serves as the starting point of your new data collection cf. article "Finalize the data collection"
To start the new data collection select the new version in the Data collection section. In this case v3.
Click the button "Go to the participation page":

- Click on ‘Participate’:

- The Start date in the Participation status will be updated and access to the new version is completed and the user can return to the Data Collection section:

- Once the previous data collection is finalized and the new one has been started, you can download data from the first version and add those to the next version.
- Go to the Registrations tab:

- Download the data by using the Download button "CSV Download All (Stable Data)":

When everything is downloaded, you can start uploading by Using the upload center.
Support Service of healthdata.be
Support Service of healthdata.beThe Service Desk of healthdata.be (Sciensano) helps users of our applications and services and deals with requests and incidents.
The Service Desk focuses on those services run by our IT Services (HD4DP, HD4RES, healthstat.be,...) and helps you with accounts and passwords. For questions about the content and objective(s) of the projects, we kindly refer users to the managing research organizations.
For most efficient processing of your request, we advise you to use our service portal: Jira Service management (JSM) portal.
Please find below our support window hours:

Create a Support ticket
Create a Support ticketThe healthdata.be service (Sciensano) processes each incident report according to a Standard Operating Procedure (SOP). A public version of this SOP "HD Incident Management Process" is also available on this portal docs.healthdata.be.
To submit an incident related to registries and applications in production and facilitated or managed by Sciensano's healthdata.be service, you must first log into the HD Service and Support portal: Jira Service Management (JSM) portal.
More info concerning how to request an account is available here.
After the login step, you will arrive at the main page of the portal
To create a ticket click on "Create a Support ticket"' on the main page.

You will see the page below. Once you have filled in all the mandatory fields, click on "Send".

Suggest improvement
Suggest improvementTo suggest improvement about the healthdata.be platform, you first need to log in to the HD Service and Support portal: Jira Service Management (JSM) portal.
More info concerning how to request an account is available here.
After the login step, you will arrive at the main page of the portal.
If you have questions, remarks or if you would like to submit a complaint, you can do so by clicking on the "Suggest improvement" button on the main page of the Jira Service Management portal.

On this page you need to fill in all the mandatory fields and click on "Send".

Email security policy
Email security policyWHAT IS THE PROBLEM?
Sciensano blocks e-mails from organizations if the configuration of their e-mail and/or DNS services allow potential abuse by spammers/attackers. More specifically, if the configuration enables other senders to impersonate your organization by allowing them to mimic your organization’s e-mail “Header From”.
In other words, they can send phishing and spam mails that cannot be distinguished from genuine mails from your organization.
If you’re responsible for managing your ICT infrastructure, keep reading. If not, pass this message on to your ICT department or to the ICT service that’s managing your ICT infrastructure.
HOW TO SOLVE IT?
You’ll have to verify that your configuration complies with “Sender Alignment” security requirements.
More specifically, your mail services and DNS will have to be configured according to ICT standards.
These configurations are common, well-documented and supported by hosting companies. Some useful links:
- https://dmarcian.com/alignment/
- https://mxtoolbox.com/dmarc/spf/spf-alignment
- https://o365info.com/how-does-sender-verification-work-how-we-identify-spoof-mail-the-fiveheros-spf-dkim-dmarc-exchange-and-exchange-online-protection-part-9-of-9/
We’ve noticed that this issue frequently occurs in organizations which moved their ICT infrastructure to cloud services such as Microsoft (O365), Amazon, Google, and MS Azure without properly configuring the ICT infrastructure which is not managed by these providers.
The configurations and recommendations need to be implemented on the customer’s ICT infrastructure, either internally or externally. DNS and Mail services are the main ICT platforms for these actions.
THE USE OF DIFFERENT DOMAINS IN THE MAIL SENDING PROCESS
E-mails contain an “Envelope From” and a “Header From”. Both need to match to avoid that the mail is blocked.
Some examples:
- A public service is using its new domain name in the “Header From” and its old domain name in the “Envelope From”.
- Envelope From = noreply@publicservice.fgov.be
- Header From = noreply@publicservice.belgium.be
➔ These e-mails will be blocked.
Remark: Because it’s a noreply address, the sender will not even be aware of us rejecting the e-mail …
2. An organization is using a cloud service (Freshservice) for its helpdesk tool and the “Envelope From” has not been customised.
• EnvelopeFrom = bounces+us.3.52773-helpdesk=organisation.be@emailus.freshservice.com
• Header From = helpdesk@organisation.be
➔ These e-mails will be blocked.
3. A company uses a cloud service (Amazon SES) to send the delivery notification and the “Envelope From” has not been customized.
- Envelope From = 01020188573f374-96de6437-9134-45f4-8aa6-3e9ac18d5848-000000@euwest-1.amazonses.com
- Header From = noreply@company.be
➔ These e-mails will be blocked.