Tobias Registry's handling of personal data

Name, social security number, contact information (address, phone number, email address), information about height, weight, and gender.

Tissue type, blood group (since 2015), virus test.

Health information affecting suitability as a donor (results from virus tests, any pregnancies and blood transfusions), your health declaration, blood type.

• Health information that affects suitability as a donor.
• Measures for donation/collection of stem cells.

• Your personal and address details are collected so that we can send out a swab kit.
• Registration to the Tobias Registry is voluntary and based on consent.

• Information such as tissue type, blood group, age is used to find a suitable stem cell donor for a patient somewhere in the world.
• It is voluntary to leave the register without giving a reason.

• Health information, such as responses to virus tests, is saved in case the same patient or another patient becomes relevant as it facilitates the selection of the right donor for the patient.
• It is voluntary to leave the register without giving a reason.

• Medical information and details about the donation are saved as they can be used to monitor the recipient's health.
• The donor's health is also monitored (if the donor chooses) and can then be compared with previous information.
• The Tobias Registry has a legal obligation to preserve the donor's and recipient's personal data to ensure the traceability of the cells. Therefore, the information is saved on the grounds of a balancing of interests, which means that it is so important to save the data that it outweighs the donor's right to erase their information.

• You provide the information yourself when you voluntarily register with the Tobias Registry or
• A donor code is generated by the Tobias Registry (this is also considered personal data).

A medical laboratory conducts an analysis of tissue type and blood group on behalf of the Tobias Registry. The results are recorded in the registry.

• The information is collected during the selection process from yourself, from the doctor who examined you, and from the laboratory and/or examinations that have been performed on you, and, if necessary, with your consent, information from other healthcare providers.
• The address details in the Tobias Register are updated with information from the Population Register.
• The details of the donation are obtained from the hospital where the donation takes place.

• Your details are linked to a donor code that is used to label the swab kit.
• Contact details are used to send out swab kits and any reminders.

• Information about tissue type, blood group, gender, and date of birth is used to find a suitable stem cell donor for a patient.
• Contact details for communication with you if you become relevant for a patient.
• Information on tissue type, blood group, gender, and year of birth is also used for monitoring the registry as a whole. In this case, personal data is not used in a way that allows an individual donor to be identified.
• Contact details are used to send information to you, such as newsletters, if you have opted for this.

The health information is used to assess suitability as a donor and to ensure the safety of both the donor and the patient.

• Name, personal identification number, and health information regarding suitability as a donor, as well as details about the donation, are used to ensure the legally mandated traceability.
• The number of donations, type of donation, information on the age and gender distribution of the registrants, as well as factors concerning tissue type are used for the registry's monitoring. Personal data is not used in a way that allows the identification of an individual donor.
• If you consent, contact details will be used to reach out to you if the patient requires an additional donation from you and to follow up on how you are feeling after the donation.

• When you join the registry, a donor code is created. The sample (swab) you return is sent along with the donor code to a laboratory for tissue typing and blood group determination.
• The donor code and information about tissue type, blood group, gender, and date of birth are transferred to an international shared search registry, where both the Tobias Registry and foreign registries can search for suitable donors for patients.
• The CRM system of the Tobias Registry is provided by Lime Technologies and is used for communication with registered individuals. The CRM system contains personal data such as social security numbers, addresses, and registration dates.
• The database and software for the Tobias Registry are provided by Steiner Ltd (www.steiner.cz) with which the Tobias Registry has the necessary agreements in place to protect personal data, as the supplier's technicians have access to the database during modifications and updates. The server for the database is managed by us but is located at the Stockholm Region.
• We ensure that all third parties with whom we share your data comply with applicable data protection laws and have adequate security measures in place.

• When assessing your suitability as a donor for a specific patient, additional blood tests are taken. To securely identify the individual being tested, name and social security number are provided to the person taking the blood sample. The person taking the sample then retains no personal information.
• To identify the sample, the donor code or the sample's test number is provided to the laboratories conducting laboratory tests.
• To identify you, your name and social security number are provided to the doctor assessing your suitability as a donor and to the staff at the hospital where the donation will take place.
• Only donor code and information on tissue type, blood group, sex, and date of birth, results of virus tests, and health information that affects suitability as a donor are provided to the hospitals treating the patient or the foreign registry that facilitates contact for a hospital with a patient abroad.
• When a foreign registry searches for a suitable donor for their patient, the registry receives the donor code for potentially suitable donors, information on tissue type, blood group, sex, and date of birth, as well as results of virus testing.
• If you have been selected as a donor, the hospital or registry will receive a summary of the results of the health check prior to the donation, in addition to the information stated above.

If there were to be any other disclosure of your personal data, you would be asked first. Your information is also protected by confidentiality, which means that it cannot be included in documentation that is disclosed according to the principle of public access from the Tobias Register.

Registration with name, social security number, contact details, gender, height, and weight is saved for 6 months. After that, returned kits will not be accepted as the code cannot be linked to personal information. We will also not be able to answer questions about this registration.

• The information is stored as long as you are registered in the registry, which is until you turn 61 years old or until you choose to leave the registry.
• Information that has been transferred to the international search registry and the American registry (donor code, tissue type, blood group, date of birth, and gender) may remain visible even after you have ceased to be registered in the Tobias Registry.

• The data is stored for 30 years after the donation (as scanned storable files in our registry program).
• The donor's personal information (donor code, tissue type, blood type, date of birth, and gender) is saved among the information about the patient who has received a transplant, which is at least 10 years.
• Since the operation is based on an international network of stem cell registries, it is possible that information transferred to the international search registry (donor code, tissue type, blood group, age, gender) may 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.

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What data is collected

• page views and visited pages
• clicks on buttons, links and interactions in forms
• navigation through sign-up flows (e.g. “Get started”, “Step 1–4”)
• technical information such as browser, device, and approximate geographic location

Purposes of the data collection

• to analyze how the website is used
• to improve the user experience and functionality
• statistics and reporting
• measuring and evaluating digital campaigns across different channels

Which services and platforms can access the data (depending on consent)

• Google Analytics
• Google Ads
• Meta
• TikTok
• LinkedIn
• Snapchat
• Reddit

• The swab (used during registration) and your donor code are sent to a laboratory in the USA for tissue typing.
• The donor code and information about tissue type, blood group, date of birth, and gender are uploaded to an international search registry, where the information can also be viewed outside the EU.
• The same data is also transferred to the American stem cell registry to facilitate searches for American patients

No

You are always welcome to contact us if you want to update or correct your information. Would you like to know your tissue type

If you wish to request all registered information, please contact us by phone or email. We will send the information about you that is in the register by mail to your registered address within one month.

Contact details:

Tobias Registry, Box 6423, 113 82 STOCKHOLM
Email: registrator.tobiasregistret@regionstockholm.se
Phone 08-746 80 20

Registered in the Tobias Registry

• Yes, if you are registered in the registry but have not donated stem cells, you can leave the registry at any time without giving a reason.
• Would you like us to delete all your information? Email: registrator.tobiasregistret@regionstockholm.se

Registered in the Tobias Registry and has donated stem cells

• According to the law, information about a completed stem cell donation must be stored for 30 years, so balancing of interests prevents us from removing the information.

You are welcome to contact us with complaints regarding the processing of personal data.

Contact information:

Tobias Registry, Box 6423, 113 82 STOCKHOLM
Email: registrator.tobiasregistret@regionstockholm.se
Phone 08-746 80 20

Data Controller: Nicole Silverstolpe, Managing Director of Tobiasregistret AB with corporate identity number 556253–1896.

The company is responsible for the management of personal data, the business is part of the Stockholm Region.

If you believe that the processing of your personal data violates the law, you can file a complaint with the Swedish Authority for Privacy Protection, IMY (www.imy.se).

In the event of changes to this privacy policy, registered users will be notified via email