On this page we gathered some frequently asked questions. If your question is not listed, please ask our employees.
I am already taking other medication, can I keep taking them?
Yes, you will continue to take your current medications. After your registration, we look closely at your current medication use. If you use a lot of (heavy) medicines, this may be a reason for not being admitted to an examination, but this varies per study. Under no circumstances should you give up your current medication use.
Will the regular treatment with my current specialist (neurologist / geriatrician) continue while participating in drug research? Or will Brain Research Center take over?
The regular treatment with your current specialist (neurologist/geriatrician) will in principle continue during the period of the examination. The Brain Research Center will inform your specialist and general practitioner about your participation. During the investigation, checks will be carried out at various times. In case of abnormal results, Brain Research Center will, with your permission, contact your general practitioner or treating specialist. In case of changes in your health, your general practitioner or specialist may also easily consult one of our research doctors.
Is Brain Research Center also looking for participants without symptoms or without diagnosis to participate in drug research?
Brain Research Center mainly conducts research on patients who have already had a diagnosis, but sometimes there are also studies that look for healthy volunteers. You can therefore also apply if no diagnosis has been made.
Can I stop the research prematurely or are there conditions attached?
Yes, you can stop at any time. There are no conditions attached to this.
Brain Research Center has several drug studies: can I indicate which research I am interested in?
Yes, you can read about current studies on our website. You can indicate your preference for a study: for example, would you prefer to participate in a short study (for example, a few months) or a long study (for example, several years). The Brain research center determines, among other things, on the basis of your medical history, age, and current medication use whether you are suitable for the research of your preference. Different criteria apply to each study and the options are examined together with the research doctor. Participation in a study is of course always in consultation.
What does participation in research mean in specific terms?
Step-by-step plan for participating in research:
Sign Up
Sign up at Brain Research Center.
Telephone intake and request medical history
You will be called for an intake by telephone, information about Brain Research Center will be sent and a form to be signed to request the medical history from the attending physician (this history is necessary to determine whether you are eligible for examination). You will be asked whether you have a so-called study partner. This is often your partner, a brother or sister, son or daughter, or neighbor: someone who knows you well and who can answer questions about your daily functioning. This person must be available to travel occasionally to appointments at Brain Research Center.
Introductory meeting and choosing an examination
If Brain Research Center does not discover any reasons in your medical history why you should not participate in a study, an introductory meeting of half an hour will be scheduled in the Brain Research Center with the pre-screening specialist and research doctor. In this conversation, you get to know more and your preferences and expectations are mutually expressed. You will then receive detailed information about a number of drug studies, so that you can read it through at home and discuss it with family or friends if necessary. You then choose which survey you want to participate in.
Screening
During the screening, all kinds of examinations are done to determine whether you can participate in the drug study. Sometimes the inspection only includes a series of questions, sometimes laboratory tests are necessary. These studies are of course always carried out in consultation with you and with your permission. This screening takes one and a half to three hours and differs per drug research. Based on the results, it is determined whether or not you can participate in the chosen drug study. If you are not eligible for one study because, for example, your memory is still too good or too weak, you may be eligible to participate in another study. Each study uses different criteria for participation.
Randomization
In drug research, some of the patients are administered the drug in question. The other part of the patients will receive a placebo. A placebo is a medicine without active substances. The patients are randomly placed in a group by a computer. Neither the patients nor the Brain Research Center know who is assigned to which group. In this way, the research results can be compared well: does the group receiving the real drug perform the same, better or worse than the placebo group? Once the drug trial has been completed by all participants, you will be notified whether you were given the working drug or placebo.
Follow-up appointments
If the screening has been completed successfully, the follow-up appointments will be scheduled. The number of appointments and the duration of the appointments differs per drug study. On average, patients come to Brain Research Center 1 to 2 times a month for a visit of half an hour to a few hours. During the introductory meeting you will receive more information about this. The documentation that you will receive also states how often you visit the Brain Research Center during the research. When planning the appointments, we naturally take into account any working hours and vacation plans of you and your partner as much as possible, but we also ask for flexibility on your part.
After the research
When you have gone through the entire research, the results will be assessed: have you remained stable, have you progressed or have you regressed? We can then decide together, for example, to go through another study or to end your time at Brain Research Center.
Can I participate in research multiple times?
Yes, that’s possible. When you have gone through the entire research process, the results will be assessed: have you remained stable, have you progressed, or have you regressed? We can then decide together to go through another study, for example, or to end your time at Brain Research Center.
Is there a financial compensation for patients?
All patients are of course reimbursed for travel and parking costs. Lunch is also provided for longer visits. There is no other financial compensation. You are participating in a clinical drug trial because the drugs offer you a chance for improvement and because you want to help future generations with a drug for dementia. Another advantage of participating in a study is that your clinical picture is properly monitored and you receive good guidance and support from professionals during the study.
What does randomization mean?
In clinical drug research, some of the patients are administered the drug in question. The other part of the patients will receive a placebo. A placebo is a medicine without active substances. The patients are randomly placed in a group by a computer. Neither the patients nor the doctors know who is assigned to which group.
What does blinding mean?
A computer randomly places the patients in a group. One group will receive the drug in question, the other group will receive a placebo. A placebo is a medicine without active substances. Nobody involved in the investigation knows which group you are in. We call that blinding.
What do the drugs look like?
The study medication consists mostly of tablets. You can take this daily at home. Depending on the drug study, the medication can also be administered every few weeks by injection or by infusion. This is done in the Brain Research Center under the supervision of the doctor.
Do I always have a chance to get a placebo?
In most drug studies there is indeed an effective and ineffective (placebo) drug. The Brain Research Center has no say in the allocation of resources: this is done automatically and the Brain Research Center does not receive that information. The Brain Research Center can only request this information in acute emergencies. There are also a number of drug studies that only work with active substances. The research doctor can inform you about this during an introductory meeting.
Will the deductible of my health insurance be used if I participate in a study of the Brain research center?
No, the treatments at the Brain research center are not covered by health insurance. So you do not have to worry about any reduction of your deductible. For each drug trial, a separate insurance policy has been taken out for all participants. If you have any questions about this, ask them during the telephone intake or during the introductory meeting. Keep in mind that other things, such as check-ups with your own specialist (outside the Brain research center), go through your own health insurance.