Questions and answers
What kind of diseases are studied?
We study the most common common diseases that occur in middle-aged and elderly people such as cardiovascular disease, osteoporosis, cancer, dementia, depression, lung disease, diabetes, obesity, joint and skeletal pain. We also study disabilities and quality of life, something that often changes as you get older.
Who has been selected to participate in EpiHealth?
The basic idea is that the participants in EpiHealth should reflect society at large in terms of gender and age, and they are randomly selected from the population register among people aged 45-75.
What do I do if I do not want to join?
Participation in EpiHealth is voluntary and can be canceled at any time. If you do not want to participate or want to cancel your participation, contact Professor Sölve Elmståhl, solve [dot] elmstahl [at] med [dot] lu [dot] se or Professor Lars Lind, lars [dot] lind [at] medsci [dot] uu [dot] se.
What does it mean to be involved?
Participants in EpiHealth undergo a health check at one of our test centers and answer questions in an online survey about health and lifestyle.
Do I have to answer all the questions in the web survey?
If you feel that certain questions do not suit your situation or that you for some other reason do not want to answer any question / questions, then it is possible to skip it / these by using the answer option "want / can not answer". If, due to lack of time, you are unable to complete all the questions at once, it is possible to complete the questionnaire spread over a few days.
Can you participate without leaving all samples or undergoing all examinations?
Yes, you can. If for some reason you do not want to leave a certain test or carry out a certain examination, you can still join EpiHealth.
Can you join EpiHealth if you have a blood infection?
Yes. State this in connection with your visit.
Do I get any compensation?
EpiHealth is a non-profit project with the task of acting as a resource for research and therefore no compensation is paid.
Why should I join?
Your participation in EpiHealth is of great scientific value. With your help, we can develop new knowledge about the factors in our lives that actually affect our health. This can lead to better individual advice for maintaining or regaining health, new ways of diagnosing and treating illness at the individual level and perhaps also to a changed way of conducting healthcare.
What happens at the EpiHealth Test Center?
At EpiHealth's Test Center, one of our test leaders will take care of you and follow you through the various tests. EpiHealth's test leaders are nurses and assistant nurses. The first time you come to the EpiHealth Test Center, you will have to sign a consent to participate in EpiHealth. The visit to us takes about 45 minutes. Of course, you can ask questions to our knowledgeable staff at all times at the test center.
How do I find my nearest EpiHealth Test Center?
With your invitation letter, you have received the name and address of your test center.
Can I cancel my participation at any time?
Yes you can cancel your participation at any time.
Can employers, insurance companies or the Swedish Police Authority see my personal information?
Insurance companies and employers will not have access to your information in EpiHealth. The same applies to relatives or authorities. EpiHealth will only disclose information to the police if a court decision so requires. This is extremely unusual.
What does my consent mean and why is it needed?
When research involves people, participants must be informed about the research and their participation and be free to choose whether they want to participate or not. On 1 January 2004, the Act on Ethical Review of Research Concerning Humans entered into force (2003: 460). The basic rule is that research may only be carried out if the researcher has consented to the research that concerns him or her. A consent only applies if the researcher has previously received information about the research. The consent must be voluntary, explicit and specified for certain research, and must be documented. A consent may be withdrawn at any time with immediate effect.
What happens if one of my results requires medical follow-up?
If the tests show that a medical follow-up is required, you will receive a recommendation to contact your family doctor, or in some severe cases to the emergency department. Do I need to prepare something for my visit to the EpiHealth Test Center? Yes, you should be fasting 6 hours before the blood test, this means that you must not eat or drink anything other than important medicines and water. For security reasons, we will ask you to confirm your identity and therefore wish that you have a valid ID with you. Contact EpiHealth if you are an insulin-treated diabetic.
What happens after the visit to the EpiHealth Test Center?
The samples are stored in a biobank for medical research. Research projects that are linked to a Swedish research institution can apply for access to EpiHealth's material. Before samples are submitted to researchers, the research study must have been approved by a regional ethics review board and by EpiHealth's board. All information provided to researchers is decoded, which means that it cannot be directly linked to an individual. EpiHealth will monitor how all participants' health develops over several years by asking for permission to access your information in several different state health registries.
How will my data be protected?
Protecting participants' privacy and living up to the trust they show us by participating is very important to EpiHealth. Participants' personal information, such as social security numbers, names and addresses, as well as information about their health, heredity and lifestyle are stored securely. In future research, all information that the researcher takes part in is decoded, which means that the information cannot be directly linked to an individual. Everyone who works, practices or has assignments within EpiHealth has a duty of confidentiality. Confidentiality and ethical principles of confidentiality apply to all oral and written participant information, regardless of whether it is on paper, in a computer or otherwise.
Can anyone make money on EpiHealth?
EpiHealth has no commercial purpose. EpiHealth will also not apply for any patents based on the research being conducted. However, individual researchers can apply for patents based on the research they have done on EpiHealth's materials. The existence of this opportunity is absolutely crucial for the research progress that is made to leave the laboratory stage and be able to lead to new medicines and medical products.
Can companies use EpiHealth?
Companies that do research to, for example, develop new drugs, such as pharmaceutical companies and academic biotechnology companies, can use EpiHealth. For this, however, it is required that they are linked to a researcher at a Swedish research institution. The research project must, just like all research projects that want to use EpiHealth, then be approved by both the Ethics Review Board and the EpiHealth board.
How is EpiHealth funded?
The basis for Epihealth comes from the government's increased research support (SFO). We are also seeking money from the university, county councils, state research councils and foundations.
I am interested in participating in the study, can I do so without being invited?
Unfortunately, it is currently only possible to participate in the EpiHealth study if you have received an invitation. Feel free to keep your eyes open on our website as in the future we may apply for spontaneous registration and possibly open in more places in the country. We thank you for your interest and hope that you will have the opportunity to participate in the future.