MS: cause unknown

Multiple sclerosis (MS) is an incurable disease of unknown origin. In the Netherlands, the disease occurs in about 1 in 1000 people.

About Multiple Sclerosis

Multiple sclerosis (MS) is a disease in which the protective and insulating layer around the nerves in the brain, spinal cord, and optic nerves (the central nervous system) is damaged. This can cause problems with walking, feeling, and seeing, and the disease affects all aspects of a patient’s life. The Netherlands has about 32,000 people with MS (source: Brain Foundation). Worldwide, about 2.5 million people suffer from this disease. MS generally occurs in people between the ages of 20 and 40.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Causes of MS

The cause of MS is still unknown. MS is an inflammatory disease of the brain in which the fatty substance surrounding an axon called myelin disappears (demyelination). While scientists don’t know why the myelin disappears, they have found that demyelination results in damage to the nerve fibers. In some cases, the damage is so severe that the nerve fibers become weakened. This effect is comparable to an electrical wire without insulation or cutting an electrical wire: the signal transmission is disrupted. When the myelin has disappeared, scars, called sclerae, form from hardened pieces of tissue around the axons. This scarring is often accompanied by further decay of the nerve fibers. Areas where the disease develops, called lesions or plaques, are located in multiple locations in the central nervous system.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Diagnosis

The diagnosis of MS can be difficult because the symptoms vary and sometimes resemble those of other diseases. There is also no simple test that provides a definite diagnosis, such as with diabetes. A group of international experts recommends that a diagnosis of MS be made when there is evidence of at least two attacks of MS-associated symptoms involving at least two different sites of the central nervous system. This is called the “McDonald criteria” for MS.

In practice, an MRI scan of the brain and usually the spinal cord will almost always be made to confirm the diagnosis of MS and to rule out other diseases. Blood tests are also often performed to rule out other diseases. Examination of the cerebrospinal fluid (“CSF”) can support the diagnosis of MS, but is not always necessary according to the “McDonald criteria”. An epidural is required to obtain cerebrospinal fluid.

Symptoms

The symptoms with which the disease manifests itself depend on where the damage is located. Because the white matter such as the spinal cord and optic nerve are usually affected, symptoms such as loss of strength, tingling, incoordination, and blurred or double vision are common. However, in MS, over time, myelinated nerve bundles can actually become damaged anywhere in the brain, including gray matter. Symptoms that develop therefore range from slurred speech, double vision, pain, and cognitive problems such as memory loss and difficulty concentrating to depression and fatigue. The symptoms that arise from an acute attack can last for several days to weeks, after which the damage then spontaneously repairs and the symptoms diminish. This form of MS is known as relapsing/remitting MS. When there is progressive MS, the symptoms are permanent and the worsening is gradual. This form of MS leads to an increasing degree of disabilities, which affect strength, balance, and coordination, and thus the mobility of the patient.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Treatment

The cause of MS is still unknown and therefore cannot be cured, although there are ways to limit the acute attacks during the relapsing/remitting form with the help of medication and to reduce the associated inflammation. Steroids, which have been used in the treatment of MS for more than 30 years, can shorten attacks and thus speed recovery from an acute attack of MS. In addition, more and more new and more selective drugs are becoming available or are already being tested in clinical trials. In addition, there are various medicines and treatment methods for symptoms such as muscle stiffness (spasticity), pain, fatigue, mood swings, bladder and bowel problems, and sexual disorders. However, treatment of the nerve degeneration that causes the progression of the disease is not yet possible.

It is often possible to shorten the duration of disabling attacks by giving prednisone, usually through an IV for three to five days. Incidentally, an attack does not recover better with this treatment than without treatment.

An increasing number of drugs reduces the risk of new attacks and the development of disability. Medicines can be (self) injected (active ingredient glatiramer, interferon-beta, or daclizumab), taken by capsule (active ingredient dimethyl fumarate, teriflunomide, or fingolimod), or given by IV in the hospital (natalizumab or alemtuzumab).

There appears to be a greater chance of serious side effects with medicines that are more effective. The more effective medicines are therefore often not initially prescribed.

There are also medications that can relieve symptoms of MS, such as remedies for spasticity, an over-irritable bladder, or difficulty walking. Not only medicines are important. Many people with MS benefit from treatments by rehabilitation doctors and therapies such as physiotherapy, occupational therapy, or speech therapy.

Would you like to know more or receive help? Always contact a medical specialist.

For detailed information, you can also visit the site of the MS Association, the patient association of and for people with MS and their loved ones: https://msvereniging.nl/

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Frequently Asked Questions

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:

  1. Sign up
    Sign up at the Brain Research Center.
  2. 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 research). 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.
  3. Introductory meeting and choosing a study
    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 study you want to participate in.
  4. 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.
  5. 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 knows 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.
  6. Follow-up appointments
    If the screening has been completed successfully, follow-up appointments will be scheduled. The number of appointments and the duration of the appointments differ 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.
  7. 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 IV. 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.

Would you like to know more or participate?