Brain Health Registry Switzerland (BHR Switzerland) is a website with a national level with the scope to bring together people interested in participating in a study related to research on Alzheimer's disease or diseases that affect memory.
The aim of this service is to facilitate the contact between people interested in participating in research studies on Alzheimer's diseases and their prevention, and researchers directly involved in these studies.
Every three seconds someone in the world suffers from dementia. Currently, many questions about prevention, diagnosis, treatment and good clinical practice in dementia remain unanswered. Research studies are one way in which researchers can find ever more precise indications on how to manage the disease and how to meet the needs of patients and their families.
To do this, researchers are examining several hypotheses and need people who are willing to participate in research studies to test them. One of their biggest challenges is the recruitment phase. During this phase, they have to identify, propose and integrate participants according to the study's selection criteria. To facilitate this task and to help those who would like to participate in a study but do not know who to contact, BHR Switzerland was born.
Participating in a study does not only help the work of the researchers: many volunteers willingly mention that their participation in scientific research has given meaning to their actions, made them proud of themselves and (more) optimistic about the future.
All persons over the age of majority may register. People over the age of 50 who have or have had cases of Alzheimer's disease in their family are particularly encouraged.
Even the most promising study can only be successful if there are enough volunteers to participate. Given the importance of the subject, public and private organizations continue to fund research into dementia and, increasingly, into its prevention. Don't hesitate to sign up to help research!
Of course you can! Many prevention studies are aimed at people without memory problems. Indeed, there is research comparing people with memory problems and people with good cognitive health. The latter are defined as "control subjects" and do not suffer from the disorder for which the treatment (pharmacological or non-pharmacological) is being tested in the study. In addition, there are studies of people who care for a family member or friend with dementia.
By registering, you may have the opportunity to participate in some of these research studies.
Yes, you can sign up. Over the years, many people notice a deterioration in their memory. Often this is related to stress, depression or other medical conditions.
Several studies supported by BHR Switzerland are looking for volunteers with memory problems or who have been diagnosed with mild cognitive impairment. During the registration phase, you will be asked to fill out a questionnaire, which will allow you to tell us whether you have any memory problems or have been diagnosed.
No, by registering on the register you express your interest in having information to evaluate your participation in research studies. For each proposed study, you will be asked whether or not you wish to participate. It is important for you to know that you will never have to participate in a study if you think it is not good for you. The choice to participate in a research program is a free and personal decision and will not affect your inclusion in the registry.
Yes, registration is free of charge, you will not be asked to pay any fees.
BHR Switzerland helps you find a study that suits you and keeps you up to date on current research studies in your city, region and throughout Switzerland.
By participating in a study, you are accomplishing something important. You are helping others and future generations by contributing to the advancement of knowledge about Alzheimer's diseases, their causes, the possibility of early diagnosis, treatment, prevention and the improvement of the quality of care for sick people and their families.
Many people also feel that participating in research studies is a rewarding experience and that they benefit from the presence of specialists involved in the study.
BHR Switzerland brings together different types of studies currently underway throughout Switzerland :
- So-called "observational" studies: they study the possible effects of biological markers, risk and/or protective factors on a group of people by observing events that occur without any active intervention by the researcher.
- "Interventional" studies: these aim to evaluate the safety and/or efficacy of new pharmacological (e.g. a drug) or non-pharmacological (e.g. brain training) treatments for the prevention of Alzheimer's disease or other memory disorders.
All studies proposed by BHR Switzerland have been approved by a local ethics committee. Ethics committees are independent bodies, composed of health or civil society personnel, which are responsible for ensuring that the interests of science, industry or the society promoting the study do not impact on the welfare, rights and safety of those who will participate in it.
At the beginning of your registration, you will be asked to provide basic information about yourself, your first and last name, and your e-mail address.
You will then be asked to read an information sheet and give your consent to use of your data within BHR Switzerland.
In order to finalize your registration, it is necessary to fill in the proposed questionnaire to determine whether there is a study that corresponds to your characteristics at that time. The more precise the information, the easier it will be to match the study to you. In this questionnaire you will need to provide the following information:
- Contact information (e.g. home address, e-mail address and telephone number)
- Medical and lifestyle information (e.g., health status, alcohol consumption and treatments you are taking)
The registration procedure is a 3-step process:
- Step 1: Fill in your name, first name and e-mail address
- Step 2: Read the information sheet and give your consent
- Step 3: Fill in the questionnaire that will be proposed to you (approx. 15-20 min)
Please visit BHR Switzerland regularly to keep up to date with the latest news.
If you meet the selection criteria for a study:
1. You will receive an e-mail informing you that a study related to your personal data is active in your region.
2. A researcher will contact you to explain the details of this research and make sure that you meet all the criteria. If you are invited to participate in a study, it is not certain that you will actually be able to participate. The email will be sent to you based on the information you entered in the questionnaire, but this information may not be up to date, new information may appear when you are contacted, making you ineligible.
3. You will choose whether or not to participate in the proposed study. If you accept, a first appointment is made with the researcher. If you refuse, you will have to wait until you receive a new e-mail indicating that your personal data correspond to the criteria of another active study.
You will always be free to choose whether or not to participate in each proposed study. Your choice will not affect your registration with BHR Switzerland.
The waiting time may depend on several factors:
- Selection criteria: there may be no studies for which you meet the required characteristics immediately and you may have to wait. After registration, some people may be contacted within a short period of time, others after a longer period and some may never be offered a study.
- Studies in the recruitment phase: it may happen that at the time of your registration no suitable studies are in the recruitment phase (open for volunteer recruitment) and you may have to wait for some time.
- Active studies in your area: it is possible that some active studies may not be available in your area. However, if you are willing to travel, you may be invited to conduct studies in regions other than your own. Just indicate this in the registration questionnaire. You can always change your answers later.
It is understandable that this can be demotivating for people who want to get involved quickly. However, BHR Switzerland is a national site that collects studies that take place throughout Switzerland. It is therefore continuously updated and new studies can be started at any time. Moreover, by registering in the registry, you are already helping research by supporting researchers in the planning of future studies designed according to the characteristics of those interested in participating. Thank you for your commitment!
Yes, this is possible. If you are considered eligible by several active studies at the same time, you may be contacted by more than one researcher. For each of them you may or may not consider participating.
Whether you accept or decline to participate in one or more studies will not prevent you from receiving further emails about new research in your area.
Nothing will happen! The decision whether or not to participate in a study is a free and personal choice. We remind you that your decision to participate or not in a study will not affect your registration with BHR Switzerland.
You can still receive e-mails for studies other than those that have been previously declined.
The information you provide will only be seen by the researchers who have access to the BHR Switzerland website, who will regularly review the data you have entered in order to assess the possibility of your participation in a research study.
If the data you entered at the time of registration changes, it will be necessary for us to update them.
To do this, you can access your questionnaire at any time by clicking on the personal link you received by e-mail when you registered.
The more up-to-date your data is, the easier it will be for the staff of BHR Switzerland to find a study that matches your current data.
There are many ways to help research. For example, you could make other people aware of the importance of medical research and tell them about this site.
You can also financially support national institutes that are developing dementia research programs.
If you wish to cancel your participation, please write us a message using the contact page. You are free to withdraw your registration at any time and you do not have to give us any reasons for doing so.
When a person wishes to withdraw their participation, their personal data and all information stored therein (e.g. state of health) are permanently deleted from the database. This means that no researcher will be able to see your information and you will not be contacted about new research studies.
However, for statistical purposes, data such as your age, gender and location will be kept in our database.
If, during your participation in a research study, you decide to cancel your registration, this choice will not affect your progress in the study or the health care you will receive.
That would be fantastic! Don't hesitate to talk about it around you.The success of BHR Switzerland also depends on how many people will know about the service and sign up for it.