Here we answer some frequently asked questions about PREDICT.
What is PREDICT?
A research project on early detection of various diseases. The aim of the project is to build an infrastructure for biomarker research. Biomarkers are substances in the blood that can be found early on in people who develop various diseases later in life.
Who is behind PREDICT?
The Faculty of Medicine at Umeå University is behind PREDICT. Responsible researchers are: Beatrice Melin, beatrice.melin@umu.se Elin Thysell, elin.thysell@umu.se
What is PREDICT doing?
Within PREDICT, researchers are working to increase the use of so-called biobanks of collected blood samples, to improve knowledge about diseases and health in the population. The research is partly based on data and blood samples that have already been collected in connection with the Västerbotten Health Surveys (VHU). No new data or samples will be collected within PREDICT.
What are the aims of PREDICT?
Researchers want to find biomarkers - substances in the blood that can be found early in patients. After various tests and checks, the biomarkers can be used in healthcare to prevent, treat or cure various diseases. Several research groups will be able to benefit from the important knowledge gained from the samples collected, to better understand many different diseases.
What does PREDICT offer and for whom?
On a general level, we also want to enable more research groups to benefit from important knowledge from samples collected in the research database, to increase understanding of many different diseases. No new data or samples are being collected, but we are renewing consent to be able to do modern research that requires consent according to GDPR and the possibility for participants to be re-contacted for research studies that are partly based on data already collected in the VHU. Research subjects will be able to respond via postal reply or via an app.
How long has PREDICT existed?
The project and the work to build a research infrastructure started with a scoping exercise in spring 2019. The start-up of the project was supported by the Faculty of Medicine from February 2020. The build-up phase is expected to last until 2022, but PREDICT is a long-term project that extends into the future, indefinitely.
How does PREDICT work?
PREDICT works on a wide-ranging basis. 31 researchers are involved in moving the research forward. The main role of these researchers is to build networks and foster collaborations with many researchers in their fields, so that more people can use the information derived from collected blood samples.
How can I get in touch with PREDICT?
Either by e-mail to PREDICT@umu.se or by phone: 090-786 63 50.
In which countries is PREDICT available?
In Sweden, within the counties of Västerbotten and Norrbotten.
About participation in the project
Is participation in the PREDICT research project voluntary?
Yes, it is voluntary.
Why should I take part in the research project?
By taking part, you will contribute to more and better research that can be used in healthcare to prevent, treat or cure various diseases. This will benefit future generations, but also yourself. If you wish, you can learn more about how different treatments can improve your health.
How is my personal data handled within PREDICT?
Collected data will be stored in a secure database at Umeå University. Personal privacy is protected by storing data separately from personal data, and thus cannot be linked to a specific person. All data is kept confidential and no unauthorised person has access to the database.
What do I give my consent to?
I give my consent to participate in PREDICT and for my personal data to be registered in a research database at Umeå University.
I want to be contacted again if research finds something that could have a significant impact on my health through follow-up or a medical intervention.
I want to be contacted again if there is a study where my biomarker profile means that researchers want to test an intervention that could affect my health. I will then be informed and can say yes or no to that study.
How do I give my consent?
You can give your consent using BankID in Hope All. You can also sign the consent form and send it by post to the Biobank Research Unit at Umeå University. How do I withdraw my consent? Participation is completely voluntary and can be cancelled whenever the participant wants, without further explanation. Please contact Elin Thysell, elin.thysell@umu.se or Beatrice Melin, beatrice.melin@umu.se
Why does PREDICT ask for a renewed consent?
People who have previously given blood samples will receive a letter from the researchers asking for renewed consent. This is needed in order to use the blood samples in research. According to the European General Data Protection Regulation (GDPR), consent and the possibility for participants to be contacted for research studies based in part on data already collected in the VHU requires a consent form. People who want to participate in the research will be able to reply and give their consent via a letter reply or via an application.
The analysis concerns my private health. How do you handle my personal data?
The main results of the study will be published in scientific journals, in such a way that individuals cannot be identified. As a rule, you will not be told the results that concern you.
Is access to the analyses produced by PREDICT voluntary?
Yes, if the analyses reveal something that could benefit your future health or that of your relatives, you can voluntarily choose to receive this information by selecting the options at the end of the consent form.
What happens if the researchers find something in the research that could have a major impact on my future health and I have authorised re-contact?
If the information that emerges could affect your health, a clinical board of experienced doctors will decide whether to contact you. You will then receive a letter, or email with BankID login, telling you that there is information about your health that the researchers can share with you. You will then decide on each occasion whether you want to receive the information. We will only contact you if we have a clear proposal for follow-up or treatment.
Who is included in PREDICT?
All PREDICT participants have previously taken part in the Västerbotten Health Survey, where they also provided a blood sample for research.
What if I want to participate in PREDICT but have not received an invitation?
All PREDICT participants have previously taken part in the Västerbotten Health Survey, where they also provided a blood sample for research. Invited people have been randomly selected to participate. If you wish to participate in PREDICT with your previously collected blood sample, please contact Elin Thysell, elin.thysell@umu.se or Beatrice Melin, beatrice.melin@umu.se
About the app/application Hope All
Where can I find the Hope app?
It can be downloaded from Google Play or the App Store.
How do I log in to HOPE via a web browser?
1. Open hope03.addimedical.com/patient in your browser 2. Select your healthcare provider, PREDICT UmU, from the list 3. Select BankID as the login method 4. Enter your Personal ID number and select Log in with BankID and follow the instructions
What does the app contain?
It contains research subject information and consent. Through the app, the consent can be updated and revoked if desired.
What can I do in the app?
You can give and withdraw consent, read information about PREDICT and ask questions in the chat.
What if I cannot download the app?
Contact Elin Thysell (elin.thysell@umu.se) or Beatrice Melin (beatrice.melin@umu.se) to get back in touch about health
Results of the study
In general, how are the results of the study communicated?
The main results of the study will be published in scientific journals, in such a way that individuals cannot be identified. As a general rule, you will not be told the results that concern you.
In rare cases, if we find something in the research that could have a major impact on your future health, there is the possibility for you to receive that information, by authorising re-contact.
