FAQs

Frequently asked questions

General

What is the Rhineland Study?

The Rhineland Study is a population-based health study that focuses on the following central questions: What keeps people healthy, what makes them ill? What factors contribute to some people ageing healthily while others develop diseases? A particular focus is on neurodegenerative diseases. Due to increased life expectancy, more and more people are developing diseases such as dementia, Alzheimer's or Parkinson's disease. These diseases typically develop over decades. We want to find ways to prevent neurodegenerative diseases and slow down the process of a developing disease. In addition, we seek to identify patterns that maintain health or cause disease. By evaluating information from large numbers of people, we hope to gain insights that will allow us to develop preventive measures against disease as well as new methods for identifying individuals at increased risk for neurodegenerative disease.

What are the background and objectives of the study?

Read more about the background and the goals of the Rhineland Study here.

Who organizes and finances the study?

The Rhineland Study is conducted by the German Center for Neurodegenerative Diseases (DZNE) e.V. and is funded by public funds from the Federal Ministry of Education and Research and the State of North Rhine-Westphalia. Other partners such as academic institutions also contribute to the funding. The DZNE is not a commercial institution and does not sell data to third parties

Participation

Where do you get my address?

We obtain the names and addresses of all residents of the selected study areas from the residents' registration office. The address data are transmitted on the basis of the provisions of §34 of the Federal Registration Act. Each selected person receives a personal letter with information about further details of the study.

Can my partner or a friend also participate in the study?

All people who live in the target area and are over 30 years old have already received (or will receive) an invitation letter and can therefore participate. Check here if you live in the target area and can participate. If you want to come together, contact our invitation team.

Why should I participate?

We know that many age-related diseases develop over decades. But we still know very little about the exact causes. To understand what makes healthy people sick or keeps them healthy, we need long-term observations based on large numbers of diverse people. Every single participation helps us to better understand the brain and the influence of different factors (e.g. lifestyle or environmental influences) on the brain. As a result, we can develop interventions for healthier ageing. Participation is therefore an important contribution to the health of current and future generations. In addition, each person who has participated will receive feedback on selected study results upon request.

Does the participation cost anything?

Participation in the study including all examinations is free of charge. At the study centre you will get drinks, a snack in case of a full-day examination and a small breakfast after the blood sample collection.

Will I be released from work to attend?

Whether you qualify for an exemption from work depends on your organisation/employer. In fact, we already cooperate with several employers who release their employees from work once per examination cycle for the duration of participation in the examinations. You can see a selection here. If your employer is not (yet) included, you are welcome to contact our invitation and information team – we will then provide information for your employer.

Is it still worth participating at my age?

In any case, there is no upper age limit! Basically, anyone invited from the age of 30 can participate regardless of their state of health. Once you have the capacity to consent to participation, and it is within your capacity to partake in our evaluation procedures, then nothing stands in your way!

CAN I STILL PARTICIPATE LATER?

Yes, this is possible. Please send us back the notification of interest indicating your desired date for contacting us or fill out our contact form. Our invitation and information team will contact you at your preferred time.

CAN I TAKE PART EVEN IF I CAN'T HAVE AN MRI EXAMINATION?

Yes, of course! It happens from time to time that individual examinations cannot be conducted for medical reasons. Nevertheless, you are welcome to participate in the study and contribute to the success of the study even if you do not have an MRI examination. In principle, all examinations should be conducted, unless specific contraindications do not allow this. In this case, the study doctor will decide which examinations are to be excluded.

Do I need to prepare for the examination?

Before each appointment, you will receive specific information that must be observed to complete participation (such as metal-free clothing, no weight training or body lotion). You can download detailed informationen in advance here.

Do I need to bring anything to the examination?

Normally, it is not necessary for you to bring medical reports with you. However, if you have had surgery on your body involving medical implants or foreign materials, we will need additional information to ensure safe participation in our MRI examination. Please bring your implant passport or, if you do not have one, an operation report from your doctor. Furthermore, we ask you to bring your medication including packaging and, if necessary, reading glasses. Further specific information will be given to you before each appointment.

Are there risks?

We ensure that participation in the study is not associated with any significant risk for you. Possible contraindications are checked in advance for each examination. All examinations are conducted by experienced and well-trained professionals.

CAN An accompanying PERSON COME WITH ME TO THE CENTRE?

You may have someone accompany you to the centre, but they preferably would not enter examination rooms in order to avoid possible distraction and associated falsification of the examination results.

Can I bring my children to the study centre?

Since the examinations take a relatively long time and there are no suitable play and recreation facilities for children in the examination centre, we ask you to refrain from bringing children to the examinations.

My German is not very good, can someone support me with the questionnaires?

Unfortunately, this is not possible at the moment, as you will complete the examinations independently with different study assistants. For this reason, the entire examination programme can currently only be completed in German.

CAN I CANCEL MY PARTICIPATION / APPOINTMENT?

We fully understand that in some cases appointments have to be cancelled at short notice. In this case, you can contact us at 0228 43302-900.

Nevertheless, we would like to point out that the examination appointments are cost-intensive, are financed with public funds and we want to work in a resource-saving manner here. In case of a cancellation at short notice, it is often not possible to reschedule the appointment. In addition, we are usually unable to offer you a new appointment in a timely manner. Therefore, please inform us in advance if you are unable to attend an appointment.

If you still have questions about your participation in the Rhineland Study, please call us at 0228 43302-900.

Examinations

Where are the examination centres?

There are two investigation centres in Bonn: one in the Hardtberg district (Heilsbachstraße 16, 53123 Bonn-Duisdorf), the other in Beuel (Landgrabenweg 63, 53227 Bonn).

Who conducts the examinations?

All examinations are conducted by our study assistants. These are medical and scientific trained personnel with very different backgrounds (e.g. medical assistants, nurses, physiotherapists, etc.). Our study assistants are all professionally trained and certified to perform the examinations. We also continuously check the quality of all examinations and adjust them if necessary.

How does the regular operation of the study continue during the Corona pandemic?

Your safety in our study centers is of particular concern to us. Since the Corona pandemic, we naturally maintain all necessary hygiene standards and follow all required safety precautions.

The general corona protection measures have changed nationwide or have been loosened. Due to this, all remaining regulations will also cease to apply from 08.04.2023 - this means that there is no longer a mask obligation for personnel and participants.

What is the examination process?

At the beginning of the examination programme, you can ask any open questions and we ask you to sign our consent form. You will then receive a wristband with a QR code under which your data will be stored so that it is immediately pseudonymised. A certified study assistant will then explain to you which examinations will be conducted. As we value your time, we try to avoid waiting times between examinations. If you would like to take a short break between examinations, drinks are available in the waiting areas. During your visit, our study assistants will guide you to the next examination, so you do not have to look for examination rooms yourself. If you have a blood collection that is combined with further examinations, we offer you breakfast in our study centre. If you have a 6-hour appointment, you can have a hot lunch snack. At the end of your appointment, you check out at reception.

Learn details about the individual examinations here.

How often do I have to come to the examination centre?

You can complete the examinations on one or more appointments. The MRI appointment always takes place separately. To schedule an appointment, call our invitation and information team or contact by mail.

Can my partner and I attend the examinations at the same time?

Yes, this is possible for most examinations. The examinations will then take place in parallel in different rooms. Simply inform our contact team of your wish when you make your appointment. For some examinations (e.g. MRI), however, parallel appointments cannot be made.

Do all examinations take place in the examination centre?

Yes, our examination centres are each equipped with their own laboratory, MRI and all the equipment needed to conduct the examinations. Examinations at other locations do not take place.

What examinations are conducted?

The Rhineland Study includes a number of different examinations. The entire examination program will take approximately 7 hours. Find detailed informationen about the individual examinations here.

Should I wear a protective mask?

The general corona protection measures have changed nationwide or have been loosened. Due to this, all remaining regulations will also cease to apply from 08.04.2023 - this means that there is no longer a mask obligation for personnel and participants.

Do I have to take pills during the exams?

No, you do not need to take any pills. We only use pupil dilating eye drops for some eye examinations with your consent.

How much blood is drawn?

In total, we will ask you for about 70ml of blood, which will be collected in different tubes. This is slightly more than a normal blood collection at the family doctor, but much less than is normally collected when donating blood (500ml).

What results are communicated?

You will receive a set of results on your blood test, physical activity, eye and hearing tests. In detail, these are the results. You can also see them in the table on page 21 of your participant information.

Privacy

How is my data protected?

We conduct the Rhineland Study in accordance with the provisions and rules of the Federal Data Protection Act and comply with all ethical and data protection regulations. Our data protection concept guarantees that all personal data is kept strictly confidential. An external, independent and secure data custodian keeps your data strictly separate from the survey and study results.

For more information, please read our rules of use.

How long will my data be stored?

Your personal identifying data will be deleted 10 years after the end of the Rhineland Study. Your examination data and biosamples will be stored in pseudonymized form for quality assurance reasons for up to 10 years after the end of the Rhineland Study.

For more information, please read our rules of use.

Who uses my data?

Your contact data (name, address, telephone number) are kept strictly separate from the survey and examination data at an external independent data trust centre. They are stored for possible queries/follow-up examinations and are protected there from outside access. Only a few persons with contractually regulated access rights will have access to your examination data. These are, for example, our scientists.  All persons involved in the study have been contractually obligated to comply with the Data Protection Act.

For more information, please read our rules of use.

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