Privacy policy - Tobiasregistret
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Processing of your personal data by the Tobias Registry

What is personal data?

Personal data is any information that can be linked to a living person. For example, it can be a name, an address, a phone number, or an email address. It can also be more sensitive information about health, infection risks or genetic background.

Why is my data collected?
Application to the Tobias Registry
  • The data identifies you, that you are suitable to join the registry and contact details so we
    can send you a sampling kit.
  • Application to the Tobias Registry is voluntary and based on consent.
Registered in the Tobias Registry
  • The information on tissue type, blood group and other data is used to find a suitable stem cell donor for a patient anywhere in the world.
  • It is voluntary to leave the registry and thereby remove your personal data without giving a reason.
Donors who have been screened for a patient but have not donated
  • Health information, such as virus test results, is stored in case the same patient or another patient might need you as a donor as it facilitates the selection of the right donor for the patient.
  • It is voluntary to leave the registry and thereby remove your personal data without giving a reason.
Donors in the Tobias Registry, who have donated stem cells
  • Medical information and donation data are stored because they may be used to evaluate the health of the recipient.
  • The donor’s health is also monitored (if you choose it) and can be compared with previous data.
  • The Tobias Registry has a legal obligation to keep the personal data of the donor and the recipient to ensure the traceability of the cells. The data is therefore stored on the basis of a balance of interests, which means that the importance of storing the data outweighs the donor’s right to delete their data.
Which data does the Tobias Registry collect about me?

If you have protected personal data, we can limit the data we store. If so, please contact us so we know how to contact you and which data we can record.

Upon application

Name, social security number, contact details (address, phone number, email address), height, weight, and gender information.
Registered in the Tobias Registry

Tissue type, blood group (since 2015), virus test
Donors screened for a patient but who have not donated

Health information affecting your suitability as a donor (results of viral tests, any
pregnancies and blood transfusions), your health assessment form, blood group.
Registered in the Tobias Registry, who has donated stem cells
  • Health data affecting suitability as a donor
  • Data for donation/collection of stem cells
Where does the data come from?
At application to the Tobias Registry
  • You provide the data yourself when you voluntarily sign up with the Tobias Registry or send an email.
  • A donor code is generated by the Tobias Registry (this is also considered personal data)
Registered in the Tobias Registry

A medical laboratory performs a tissue type and blood group analysis on behalf of the Tobias Registry. The results are recorded in the registry.
Donors in the Tobias Registry, who have matched a patient or donated stem cells
  • The data is collected during the selection process from yourself, from the doctor who examined you and from the laboratory and/or tests performed on you and, if necessary, with your consent, data from other healthcare providers.
  • The address data in the Tobias Registry is updated with data from the Swedish Population Registry.
  • The information on the donation is obtained from the hospital where the donation takes place
What is my data used for?

The data is not used for anything other than what we inform you about. If you are chosen to proceed and be investigated for a patient, a new consent will be obtained which also describes the handling of personal data.

At application to the Tobias Registry
  • Your data is linked to a donor code which is used to label the sampling kit.
  • Contact details are used to send out sampling kits and potential reminders.
Registered in the Tobias Registry
  • Data on tissue type, blood group, gender and date of birth are used to find a suitable stem cell donor for a patient
  • The contact details for communicating with you if you have matched a patient
  • Data on tissue type, blood group, gender and year of birth are also used to monitor the registry as a whole. This means that personal data is not used in such a way that an individual donor can be identified.
  • Contact details are used to send you information, such as newsletters, if you have chosen to do so.
Donors under evaluation for a matched patient

Health data is used to assess donor suitability and to ensure the safety of the donor and the patient.
Donors in the Tobias Registry, who have donated stem cells
  • Name and social security number as well as health data on donor suitability and donation details are used to ensure legal traceability.
  • The number of donations, the type of donation, information on the age and gender distribution of registrants and tissue type factors are used for the monitoring of the registry. This means that personal data is not used in such a way that an individual donor can be identified.
  • If you have given your consent, your contact details will be used to contact you in case the patient needs another donation from you and to follow up on your well-being after the donation.
Will my data be disclosed to anyone other than the Tobias Registry? Why and where?

If there is any other disclosure of your personal data, you will be contacted beforehand. Your data is also protected by confidentiality, which means that it cannot be included in any documentation disclosed under the principle of public access by the Tobias Registry.

Registered in the Tobias Registry
  • When you join the registry, a donor code is created. The sample (swab) that you return will be sent together with the donor code to a laboratory for tissue typing and blood grouping.
  • The donor code and the data on tissue type, blood group, gender and date of birth are transferred to an international combined search registry, where both the Tobias Registry and foreign registries can search for matching donors for patients.
  • The database and software for the Tobias Registry is supplied by Steiner Ltd (www.steiner.cz) with whom the Tobias Registry has the necessary agreements to protect personal data as the supplier’s technicians have access to the database in case of changes and updates.
  • The server for the database is managed by us but is located at Region Stockholm.
Donors in the Tobias Registry, who have been evaluated for a patient or are going to donate stem cells
  • When assessing your suitability as a donor for a particular patient, additional blood tests are taken. Your name and social security number is given to the person taking the blood sample in order to identify you. The health center or the blood center does not save any personal data afterwards.
  • In order to identify the sample, the donor code or sample code is provided to the laboratories carrying out laboratory tests.
  • To identify you, your name and social security number are given to the doctor who assesses your suitability as a donor and to staff at the hospital where the donation will take place.
  • Only the donor code and data on tissue type, blood group, gender and date of birth, results of viral tests and health data affecting donor suitability are provided to the hospitals treating the patient or the foreign registry mediating the contact of a hospital with a patient abroad.
  • When a foreign registry is looking for a suitable donor for its patient, the registry receives the donor code of potentially suitable donors, information on tissue type, blood group, gender and date of birth, and results of viral tests
  • If you have been selected as a donor, the hospital or registry will receive a summary of the results of the pre-donation health check, in addition to the information listed above.
Will my data end up outside the EU?
  • The registration sample (swab) and your donor code and the sample are sent to a laboratory in the US for tissue typing.
  • The donor code and data on tissue type, blood group, date of birth and gender are uploaded to an international search registry, where the data can also be viewed outside the EU.
  • The same data is also transferred to the US stem cell registry to facilitate searches for US patients.
How is my data protected?
  • The registration sample is pseudonymised (the sample is identified by a donor code and never by name and/or social security number).
  • The sample is sent for testing to a laboratory with which the Tobias Registry has a written agreement. The terms of the contract have also agreed on data protection procedures such as confidentiality, sharing of data and proper destruction of samples and results.
  • In the data sent to the international search registry and the US registry, you are identified only by the donor code, never by name or social security number.
  • Data processors are bound by professional secrecy
  • computers linked to the registry require identification of the user with an e-service card (SITHS) and code.
  • The registry is protected by a username and password and is only accessible to those who need it for their work. Registry views and additions, modifications and deletion of data are restricted by permissions. Use of data is restricted by contracts with service providers. Paper documents containing data are stored at the Tobias Registry in locked areas with limited access and in locked cabinets.
  • Medical data is transmitted by post (e.g. your written health assessment form) or by pseudonymised personal data if sent by e-mail or fax. Even if you ask questions by e-mail, our response will not contain your personal data or health data.
  • Documents are destroyed in approved confidentiality containers
  • The registry data and its use are subject to regular data protection audits and risk analysis. The Tobias Registry has continuous reporting and investigation of deviations.
Are profiling or automated decisions made on the basis of my data

No

How long will my data be stored?

Data is stored for as long as there is a purpose for storing it or as required by law. Data is not stored if consent is withdrawn.

An individual who applied to the registry but did not return a sampling kit:

  • The registration with name, social security number, contact details, gender, height, and weight will be stored for 6 months. Thereafter, returned kits will not be accepted as it is not possible to link the code to personal data. We will also not be able to answer questions about this application.

Registered in the Tobias Registry:

  • The data will be stored for as long as you are registered in the registry, which is until you reach the age of 61 or until you choose to leave the registry.
  • Data transferred to the international search registry and the US registry (donor code, tissue type, blood group, date of birth and gender) may remain visible even after you stop being registered in the Tobias Registry

Registered in the Tobias Registry, who has donated stem cells:

  • The data is stored for 30 years after the donation (as scanned storable files in our registry software).
  • The donor’s personal data (donor code, tissue type, blood group, date of birth and gender) is stored among the information on the patient who has received a transplant, which is at least 10 years.

As the activity is based on an international network of stem cell registries, it is possible that the data transferred to the international search registry (donor code, tissue type, blood group, age, gender) can be found in other registries or reports (e.g. among the data from the search for a donor for the patient) even after they have been removed from the Tobias Registry’s own records and from the international search registry.

How can I check my data and rectify incorrect data?

You are always welcome to contact us if you want to update or rectify your data.

If you want to know your tissue type, blood group or viral response, contact us and we will send the information to your address registered in the Swedish Population Registry.

If you want to request all your data in the registry, please contact us by phone or email. We will send the information about you contained in the registry by post to your address registered in the Swedish Population Registry within one month.

Contact details:

Can I ask for my data to be deleted or prohibit its use?

Yes, if you are on the registry but you have not donated stem cells. The data on a completed stem cell donation is required by law to be stored for 30 years, so a balance of interests prevents us from deleting the data.

Due to the fact that the activity is based on an international network of stem cell registries, it is possible that the data transferred to the international search registry (donor code, tissue type, blood group, date of birth, gender) are present in other registries (e.g. among the data from the search for a donor for a patient) even after they have been removed from the Tobias Registry and from the international search registry.

Can I complain?

You are welcome to contact us with complaints about personal data processing. Contact details:

The Data Controller: Nicole Silverstolpe, CEO at Tobiasregistret AB with organization number 556253-1896.

The company is responsible for the processing of personal data and is part of Region Stockholm.

If you feel that the processing of your personal data violates the law, you can complain to the Swedish Authority for Privacy Protection, IMY (www.imy.se).

Want to know more?

The Tobias Registry complies with Region Stockholm’s rules for personal data processing, please have a look at their website for a general description.

https://www.sll.se/om-regionstockholm/uppdrag-och-ansvar/integritet-och-behandling-av- personuppgifter/

When you visit a hospital for examinations or to donate stem cells, the healthcare system’s rules on personal data apply.

These rules can be found on the 1177-vårdguiden (healthcare guide). Please search for “How we protect and manage your data”.

The law we refer to is Act 2008:286 on quality and safety standards for the processing of human tissues and cells.

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