What is digiDEM Bavaria and what are its goals?
The Bavarian Digital Dementia Register, or „digiDEM Bayern“ for short, is a research project. The goal is to improve the care of people with mild cognitive impairment (MCI) and dementia, and their caregivers and relatives, throughout Bavaria. The project is funded and supported by the Bavarian State Ministry of Health, Care and Prevention (StMGP).
On the one hand, online services are being developed for this. You can get an overview of the current digital offerings here download. On the other hand, research data is collected from people with cognitive impairments and their caregivers and relatives. How does the disease progress? How great is the burden on relatives and caregivers? What support services are available locally? What is missing?
We want to find this out through surveys. We need your support for this! Only through your information can we discover potential gaps in care and better understand the course of the illness. By participating in the project, you personally contribute to improving the care of people with dementia and their families. This research does not aim to diagnose you.
For further questions, please send an email to: info@digidem-bayern.de or contact the project team by phone. You can find the phone numbers of the respective contact persons here.
Participation
Throughout Bavaria, people with memory impairments and their primary caregivers (family and friends providing care) will be surveyed. The primary caregiver is the person from your family and circle of friends who takes on the largest share of your care. Alternatively, secondary caregivers who provide support at least once a week may also participate.
If you don't have a caregiver or relative who looks after you, and if you can still answer questions well yourself, then you can also participate in digiDEM Bayern without a caregiver or relative.
By participating in the study, important insights can be gained that can sustainably improve the care for people with dementia and their caregivers throughout Bavaria. Furthermore, your data can help to better understand the forms of dementia and their progression.
- You will have the opportunity to have your memory performance regularly checked.
- You will be interviewed by trained professionals and can describe your personal situation.
- You will gain access to our digital services for everyday support.
- You have the opportunity to influence the care of affected individuals in Bavaria through your contribution.
Your experience counts!
A detailed explanation of the project's objective, content, and proceedings will be provided by research partners and employees involved in the digiDEM Bavaria project.
The research partners are professional staff from Bavarian care facilities for people with dementia, including counseling centers, memory clinics, and outpatient nursing services. These individuals have many years of experience and a high level of expertise in dealing with people with dementia and their relatives and caregivers. Furthermore, the research partners are completing a standardized training program as part of digiDEM Bayern. Annual refresher training courses are conducted to ensure they are always up to date. Both the training program and the annual refresher courses are documented in a contract and are therefore mandatory.
You can view an overview of all research partners on the following website: https://digidem-bayern.de/digidem-in-ihrer-naehe/
Before participating in digiDEM Bayern, your suitability for the study will be assessed through a short test. If you are suitable for participation in the study, you can take part in digiDEM Bayern. Your participation is, of course, voluntary and there will be no disadvantages for you if you do not participate.
You can end your participation at any time and without giving a reason.
After your initial interview, we would like to contact you again for follow-up interviews at 6 months, one year, and then annually thereafter. Each interview is expected to take approximately 90 minutes. At a later point in the project, we may ask for your consent to obtain additional health and social data from you. For example, data from your health insurance provider. Participation in this is voluntary. Even if you do not consent, you can continue to participate in the research project.
Your participation in the research project is always voluntary, and no disadvantages will arise from your non-participation. Of course, you can withdraw your participation at any time.
Since you will only be asked questions regarding digiDEM Bavaria, there are no risks for you in participating.
There are no costs for you to participate in digiDEM Bavaria.
The results of digiDEM Bavaria will be published in scientific journals. You will find the articles on the homepage after publication. www.digidem-bayern.de find.
In addition, the homepage provides information on the course of the study and other useful tips and information on the topic of „dementia“. After completion of the project, a final report will be published on the homepage of the Bavarian State Ministry of Health, Care and Prevention (StMGP). The results will be published exclusively in an anonymized form.
Anonymization
In anonymization, your data is modified so that it can no longer be attributed to you, or only with disproportionate technical effort. In contrast to pseudonymization, your data is not linked to any identifier here.
Consent and Data Protection
Your consent to the collection of your data is valid – unless you revoke it beforehand (see below) – from the time of your consent until the end of your life. This means that during this period, data may be collected from you again with prior notice, without you having to sign a new consent form. Your consent to the processing and use of the data collected to date also remains valid beyond this period.
Your consent is voluntary!
You can revoke your consent to the further collection and scientific use of your data at any time, in whole or in part, without stating any reasons and without any adverse consequences for you.
A revocation always applies only to the future use of your data. Research data collected during the surveys cannot be removed retrospectively. In the event of a revocation, however, your personal data stored on the basis of this consent will be completely deleted or anonymized, provided this is legally permissible. If deletion is not possible, or not possible with reasonable technical effort, your data will be anonymized by completely replacing identifying features in the dataset. No disadvantages will arise for you from a revocation.
For a cancellation, please contact us in writing at:
Friedrich-Alexander-University Erlangen-Nuremberg, Interdisciplinary Centre for Health Technology Assessment (HTA) and Public Health, Schwabachanlage 6, 91054 Erlangen
The purpose of data processing arises from the goals of digiDEM Bayern, which are to improve the care situation for people with cognitive impairments and their family caregivers, and to analyze regional care needs. Since many different factors usually influence the development of dementia, it is necessary to collect data over as long a period as possible, ideally until the end of life. This allows for the scientific evaluation of the data to investigate the commonalities within a group of patients, the differences compared to other groups, and the course of the disease.
The security of your data is very important to digiDEM Bayern. Therefore, your data from the surveys will only be stored pseudonymously in a special registry database.
Pseudonymization
Pseudonymization means that your name and other identifying features (date of birth, address, etc.) are replaced by an identifier. The identifier consists of letters and
Numbers. With pseudonymization, the provided data cannot be traced back to you, or only with disproportionately high technical effort. Data that identifies you will never be shared with researchers or other third parties, particularly not with insurance companies or employers, except in cases permitted by you or regulated by law.
The identifier (pseudonym) is linked to both your personal data (such as name, address, phone number, etc.) and your survey data. This is necessary so that you can be contacted again after the initial survey and the data from your subsequent surveys can be linked to the already collected survey data. However, your personal data is stored in a separate, independent participant database. This ensures that no single person has simultaneous access to both the participant database and the registry database, so that your personal data cannot be linked to your survey data. This is intended to exclude or significantly impede your subsequent identification. The data protection concept of digiDEM Bayern has been reviewed and approved by the data protection officers of the Friedrich Alexander University Erlangen-Nuremberg. The data collected will be analyzed by scientists employed by the digiDEM Bayern project. Your consent also includes the possibility that other researchers from Germany or other countries where the European Union's General Data Protection Regulation (GDPR) applies can request access to the data. To do this, they must enter into a contract with the digiDEM Bayern project management. Only the digiDEM Bayern project management decides who is allowed to use your data. They ensure that the data is only used for scientific purposes and in the public interest. Furthermore, the data will only be shared in anonymized form.
Your data will not be sold or transferred to countries outside the European Union that do not comply with European data protection standards.
Your personal data will be stored until December 31, 2040. If you withdraw your consent, move into a nursing home, or pass away, your contact details will be immediately and completely deleted or anonymized, if legally permissible. The data from the surveys will be stored until December 31, 2040. The duration of data storage is necessary from a clinical and care perspective due to the course of dementia and the duration of memory impairments. A 40-year-old person with mild cognitive impairments or early-stage dementia has an observation period of approximately 20 years. The acquisition of long-term data and the resulting insights can be valuable for understanding dementia and for the care of people with dementia and their caregivers.
Under Article 21(6) of the GDPR, you have the right to object to the processing of your personal data.
For an objection, please address us in writing:
Friedrich-Alexander-University Erlangen-Nuremberg, Interdisciplinary Centre for Health Technology Assessment (HTA) and Public Health, Schwabachanlage 6, 91054 Erlangen
