The intercantonal Brain Health Registry involves various memory centres or research centres in Switzerland for research on the prevention of Alzheimer's disease and memory disorders. This information sheet describes all the details of the registry.

1.    What is a register ?
A register is nothing more than a list of names with a certain amount of personal information.

2.    Objectives of the register
-    To facilitate the participation of Swiss residents in clinical trials and research studies on the prevention, diagnosis and treatment of Alzheimer’s disease and memory disorders.
-    To develop a network between the different Memory clinics in Switzerland to enable Swiss citizens to contact the center that suits them best, and to choose the clinical trial or study that suit them best.

3.    Selection of persons eligible to participate in the register
Registration in the register :
-    is open to all adults.
-    mainly targets people aged 50 and over, with or without memory problems.

4.    General information on the register
Participation in research studies is defined as a partnership between scientists and civil society. Participants offer their time to enrich the observations of researchers in very specific areas, often benefiting from innovative and unaffordable diagnostic and pharmacological technologies through other means.

In addition, online registries allow interested persons to easily access studies by bringing together in one place several studies conducted in different geographical locations in Switzerland. A few countries, such as the USA or the Netherlands have already successfully implemented this type of online registry with thousands of registered members. In Switzerland, the HUG Memory Center has now created such a national online registry for people interested in research on memory and Alzheimer's disease. 

There is currently no end date for this registry and the number of participants is unlimited. Anyone interested in dementia research can register.

We have set up this online registry in accordance with the requirements of Swiss legislation. The competent cantonal ethics commission has been informed of the creation of this register in an advisory capacity.

5.    Procedure for participants
 The volunteer, having given his consent to participate in the register and provided an e-mail address, receives his consent in pdf format and then, in a second e-mail, a link that allows him/her to access the form hosted on a protected platform.. Contact data (identity) and clinical information are kept separately to ensure confidentiality. 

If you decide to take part in the register, here is a diagram describing the different stages of your participation:

 

Please note that it can take a long time before you are contacted for a study. The duration will depend on the number of studies open for recruitment, the selection criteria for the studies and your profile. It is also possible that you will never be contacted because you do not meet all the study selection criteria (e.g. specific age category, absence of hypertension). In this case, you are encouraged to contact your reference memory clinic for explanations.

6.    Benefits for participants
By regsitrering in this register, it will be possible, depending on the studies in wich you may participate, to have access to pharmacological or non-pharmacological interventions aimed at delaying the onset or reducing the risk of cognitive symptoms related to Alzheimer’s disease or other forms of dementia. Some studies also provide the benefit of diagnostic tests that are expensive in routine care or not at all accessible in the ordinary course of care. Other studies do not offer particular benefits to participants. Please understand what type of project you are being offered before confirming your participation.

7.    Rights of participants
You are free to accept or refuse to take part in the registry. If you choose not to register, you will not be required to provide any reasons.

Furthermore, if you have completed the registration questionnaire and are therefore part of the registry, you will not be obliged to participate in any future study. It will be up to you to decide whether or not to participate in one or more studies that may be proposed to you. If you refuse to participate in a study, this will not affect your inclusion in the Register or your ability to participate in other studies. Your data will remain stored and you can always be contacted if you are eligible for a new study.

You are also entitled to ask any questions you may have at any time. To do so, please contact one of the persons listed at the end of this information sheet.

8.    Obligations of the participants
In order to register, you will be required to complete the registration questionnaire on your demographic and medical data and to be available in case you are contacted for a potential study. No other obligations are envisaged.

9.    Disadvantages
By registering you do not incur any risk. The only requests you are asked to fill in the questionnaire (10-20 minutes) and to be available to be contacted for a potential study. 

10.    Data confidentiality
For the purposes of the register, we record your personal and medical data that you entered in the registration questionnaire. These two types of data (identity data and medical data) are kept separately for reasons of confidentiality. All the data is stored on a protected computer platform and located on a secure server at the HUG. Only authorised personnel may consult your data, and exclusively in order to carry out the tasks necessary for the register (e.g. determining whether a profile meets the selection criteria for an open study that relies on the register). By agreeing to register, you authorize them to access your personal and medical data. Even fewer people will have access to both types of data.

The register may be subject to inspections by certain Swiss authorities or institutions. The management of the register may have to communicate your personal and medical data for the purposes of these inspections. All persons involved are bound by professional secrecy. We guarantee compliance with all data protection guidelines and will not include your name in any reports or publications, whether printed or online.

In the event that, for a justified reason, a new procedure that may affect your consent is put in place, the person responsible for the registry will notify you of the new procedure as soon as possible. 

11.    Withdrawal from the register
You are free to unsubscribe from the register at any time without giving a reason. In this case, your data will be permanently deleted from the register. To cancel your registration, please contact one of the persons mentioned below or send an e-mail. Thereafter, you will not be contacted for further studies via www.bhr-suisse.org, unless you have participated in a research study and given your consent to be contacted again for future studies.
You can also decide to unsubscribe from the register when you participate in one of the studies offered to you. In this situation, your deregistration from the register will not affect your participation in that research study.

12.    Remuneration of participants
If you register, there will be no cost to you and you will receive no remuneration.

13.    Financing of the register
The register is financed by the Centre de la Mémoire des Hôpitaux Universitaires de Genève.

14.    Contact person(s)
If you have any doubts, fears or questions before or after your entry in the register, you can contact one of the following contact persons at any time by telephone or e-mail :