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.
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.
Name, social security number, contact details (address, phone number, email address), height, weight, and gender information.
Tissue type, blood group (since 2015), virus test
Health information affecting your suitability as a donor (results of viral tests, any
pregnancies and blood transfusions), your health assessment form, blood group.
A medical laboratory performs a tissue type and blood group analysis on behalf of the Tobias Registry. The results are recorded in the registry.
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.
Health data is used to assess donor suitability and to ensure the safety of the donor and the patient.
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.
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 Data is not stored if consent is withdrawn.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:
Registered in the Tobias Registry:
Registered in the Tobias Registry, who has donated stem cells:
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.
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.
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.
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).
The Tobias Registry complies with Region Stockholm’s rules for personal data processing, please have a look at their website for a general description.
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.