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Information on Data Processing, Data Protection and Data Security

A key aspect of the project is the processing of my data in an exclusively pseudonymised manner. What does that mean and how is it carried out?

During your first visit, your clinician will enter certain data about you into the computer. From these personal data a unique code name (pseudonym) is calculated, consisting of a series of 9 digits.
The following personal data are used: first name, last name, birth name (surname), date of birth and gender.

Example:
Mary Miller nee Smith, female, born 10.11.1964.
This information generates the code (pseudonym): 989-754-613.
Importantly, the pseudonym is created on the basis of a hash-algorithm. This is where an explicit unique value is assigned during a complicated mathematical procedure. The mathematical algorithm ensures that this can only take place in one direction, i.e. the resulting value (the pseudonym) cannot be traced back to your person by anybody (not even the system programmer).

Which data do I have to reveal apart from the registration data in the course of the Registry study?
During the course of the TTP Registry study, some medical data will be recorded as well as your personal details (see Patient Information Sheet for further details).

Who can see and use my data?

You
If you wish, you can gain access rights with which you can call up your data. If you don’t have access to your stored data, you can view the data stored about you through the clinician treating you.

The clinician treating you
The clinician treating you locally, who is also your contact person with the TTP registry, is the only person apart from you who can link your pseudonym and personal details.
After the initial registration, however, data entry and viewing by your treating clinicians is carried out via the pseudonym assigned to your person. Your clinician can use your personal information to contact you as and when future studies arise for which you are a suitable candidate.

TTP registry staff
TTP registry staff analyses your stored data in order to

contact the treating clinician and
co-ordinate projects and trials with the data.

TTP registry investigators can only view and use pseudonymised (non-identifying) data entered on the TTP registry.

For the purpose of data control, investigators of the TTP registry (monitors and auditors) are allowed to check with clinicians treating you that the data entered onto the network matches with the data found in your medical records. Naturally, monitors/auditors are bound by confidentiality during this, and no personal data will be recorded outside the documentation belonging to clinicians treating you.

Scientists
This only includes scientists who are involved in hereditary TTP research. The scientists have to apply to the Steering committee (see page of Steering committee for information on members) for authorisation to use the data. These scientists can only view and use the pseudonymised data. They are also required to ensure that any further use of the data and any publications will be carried out in an anonymised form (i.e. not even using the pseudonym).

System administrators
In order to administrate and to safeguard the TTP registry central database, a small number of authorised system administrators can view pseudonymised data.

Other individuals and groups
Nobody other than the groups and individuals stated above can access or receive your data. This applies for both identifying and pseudonymised data.

What reassurance do I have that unauthorised individuals cannot gain access to my data via the internet?

During data entry, data processing is encrypted. The server where the database is stored is located behind a firewall. This sophisticated security system ensures that only authorised computers and individuals can access the database. Furthermore, the central database holds no record of your personal identity as it is pseudonymised.

How long is my data stored for?

All data will remain stored for the foreseeable future. A complete deletion of data is impossible because the data is likely to have become part of a scientific study. The reason for this is because the responsible researchers have to be able to prove that the relevant study was carried out in accordance with regulations, even years after the research was completed. Alternatively, complete anonymisation can be carried out in the following cases:

If you withdraw from participation in the TTP registry and request anonymisation of past data relating to the study.
If you request complete anonymisation of your data.

Following anonymisation, there is no possibility of the data being linked to you.

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