What is the NAPS Consortium?
Rapid Eye Movement (REM) sleep behavior disorder (RBD) is a rare sleep disorder in which people move and talk during their dreaming sleep. Many people with RBD develop another neurological disease, usually Parkinson’s Disease, Dementia with Lewy Bodies, or Multiple System atrophy—collectively termed synucleinopathies—within several years. Currently, there are no treatments to slow or prevent these neurodegenerative diseases, however, there are some promising treatments on the near horizon. The goal of the North American Prodromal Synucleinopathy (NAPS) Consortium is to plan a clinical trial for treatments against neurodegenerative diseases in people with RBD. To prepare for a clinical trial, we are enrolling people with RBD in a registry, and collecting from them a standardized set of measurements about neurological functioning, blood samples, and other biomedical information. Ultimately, we hope to enroll our registry participants in a clinical trial for preventive treatments against synucleinopathies.
Am I eligible to participate?
The NAPS Consortium is recruiting people with Idiopathic RBD, meaning that the RBD is not due to any known cause. Therefore, if you have narcolepsy or another neurological disorder, you are not eligible for the study. You must be at least 18 years old to participate.
If you think you might have RBD but it has not been diagnosed officially, you will need to see a sleep doctor at an accredited sleep center. Please contact us or see the “Resources” section for information about sleep doctors near you.
What does the study entail?
Your participation in the study will involve a visit similar to a doctor’s visit, except longer. The estimated duration of the visit is 2 hours.
You will provide information about your medical history, and you will have a physical exam.
If you have a bed partner (someone who sleeps in the same bed as you) or live with someone, we prefer for that person to come to the visit as well to provide additional information.
You will fill out questionnaires about your medical and sleep history.
You will have testing of your memory, thinking, movements, and other neurological functions.
You will have a blood draw.
At select sites, you will have the option of having a lumbar puncture to provide a sample of cerebrospinal fluid (CSF). CSF surrounds the brain, so we can perform tests on CSF to look for brain changes, that cannot be performed on blood.
At certain sites, there may be options for additional tests such as brain scans, sleep studies, and other tests.
You will be compensated for your time and effort, or you can choose to donate your compensation to the NAPS Consortium.
Where is the study?
You will need to go to a NAPS Consortium member site in order to participate in the study. Please see the “Team” page for information on the member institutions of the NAPS Consortium.
If you live too far from a NAPS Consortium site, but you are interested in participating, please contact us anyway. We will keep you on a waitlist for when we have additional support for travel costs, or if a new site opens closer to you.
Please fill out the form below if you would like to participate in the study.
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