Frequently Asked Questions

Is this a genetic test?

No. This is not a genetic test and you should also state so when asked, for example by insurance companies.

Can my DNA be used for Genetic Cloning?

Organisms cannot be cloned from DNA alone, only from stem cells, and this research study has nothing to do with cloning.

Will you check my DNA for other things?

No, our genetic research is only intended to find the genes that cause CAE, this is not a genetic test, we do not look for anything else.

Will my participation in the study have an effect on my insurance coverage?

No, we do not share any information about your participation in this research study with anyone else, and any information obtained during this study will remain confidential. The Certificate of Confidentiality from NIH provides us with the legal protection so that no insurance company can force us to release any information about you. There will be no costs for your insurance company involved in your participation in our study.

How long does it take to find the causes of CAE?

Since the cause of CAE is unknown, we do not even know what we are looking for. We will first know where the contributing gene is located and once we found it, we can look what it is. It is like finding someone in America. America is a big country, but we have sign posts (our ‘markers’ we test) that tell us this person is not here. Or, when we are lucky enough we will find sign posts that tell us, this person (gene) could be here. But if the person we are looking for is in Los Angeles and we start looking for him/her in New York and make our way up through the country, it will take a long time to find this person. Because CAE is complex and probably many genes have to come together in various ways, we anticipate that solving this puzzle might take several years. We also know that we cannot do this alone – we need your help and the more families that participate in the study, the better our chances are of finding the cause of CAE.

Are you sharing my information with anybody?

No, all your information is confidential and we do not share any of your information with doctors, or medical insurance companies or your relatives.

Will I receive results from my blood/saliva tests?

No. The things we are measuring have no meaning or clinical significance like, for example when the lab measures your glucose level or your liver enzymes.

What is an EEG?

An EEG is an Electroencephalogram. The brain cells communicate by electrical impulses, and an EEG is a test that measures and records these electrical impulses in the brain. It works the same way as in an ECG (electrocardiogram) where those impulses from the heart are measured. Those impulses have to be measured by sensors (electrodes) that are attached to a person’s head. They are then send to a computer through wires that are connected to the electrodes where they are recorded and can be seen on the computer screen.

How is an EEG done?

An EEG is not painful in any way. Usually about 12 electrodes are attached at specific sites on the head. Often a sticky paste is used for this or, as we do, one can use a cap with the electrodes pre affixed and insert some gel into little wholes in the electrodes. The person must lie down and remain still while the EEG is being recorded. During the recording, the person is asked to breath heavily for 5 min. (called hyperventilation) and a strobe is flashed in front of the face for a few seconds (called photic stimulation).

Are there risks associated with an EEG?

Very few risks are associated with an EEG. The paste used to affix the EEG electrodes may produce occasional allergic reactions such as a rash or itching. During photic stimulation there is a slight chance a seizure is triggered in somebody who is sensitive to flickering light. However, the EEG technician will closely monitor the patient and will stop the flickering light as soon as the first traces to such a response in the EEG is found.

Can you read my thoughts with the EEG?

No, an EEG (electroencephalogram) is a test like an ECG (electrocardiogram) used to measure and record only the electrical activity of your brain.

If you have any other questions, please do not hesitate to contact us at: 1-877-2235900