Patient Webinars
Webinar | December 10, 2023
The patient webinar for our North American Prodromal Synucleinopathy (NAPS) consortium study on December 10, 2023.
Featuring: NAPS Co-Investigators, Dr. Alon Avidan, Director of UCLA’s Sleep Disorders Center, Dr. Aleksandar Videnovic, Director, Division of Sleep Medicine, Massachusetts General Hospital, and Dr. Michael Howell, Professor and the Division Head of Sleep Medicine in the Department of Neurology at University of Minnesota.
Special guest: Dr. Alex Iranzo from Hospital Clinic de Barcelona discusses RBD in visual arts.
Webinar | June 22, 2023
The patient webinar for our North American Prodromal Synucleinopathy (NAPS) consortium study on June 22, 2023.
NAPS Patient Webinar | June 2023, Part 1 | Opening Remarks (Aleksandar Videnovic)
NAPS Patient Webinar | June 2023, Part 2 | Overview of NAPS Consortium (Yo-El Ju)
NAPS Patient Webinar | June 2023, Part 3 | How To Get More Involved (Brad Boeve)
NAPS Patient Webinar | June 2023, Part 4 | Highlights of NAPS accomplishments (Ron Postuma)
NAPS Patient Webinar | June 2023, Part 5 | Overview of NAPS RBD Registry (Alon Avidan)
NAPS Patient Webinar | June 2023, Part 6 | A Participant’s Perspective (Ray Merrell)
Webinar | April 9, 2021
The patient webinar for our North American Prodromal Synucleinopathy (NAPS) consortium study on April 9, 2021.
Join the REM Sleep Behavior Disorder Registry
The NAPS Consortium on REM Sleep Behavior Disorder (RBD) has established a registry for individuals living with RBD, partners and family of someone diagnosed with RBD, and those wanting to learn more about RBD.
This information is used to identify study participants, assist care teams providing care to individuals with RBD and to study RBD treatments and outcomes.
Your privacy is important to us. All personal health information (PHI) is protected and stored in a HIPAA compliant system.
Participate in the NAPS Consortium
What is the NAPS Consortium?
Rapid Eye Movement (REM) sleep behavior disorder (RBD) is a sleep disorder in which people move and talk during their dreaming sleep. Many people with RBD develop another neurological disorder, 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 disorders; 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 disorders in people with RBD. To prepare for a clinical trial, we are enrolling people with RBD in a registry, performing a standardized set of measurements about neurological functioning, and obtaining blood samples and other biomedical information. Ultimately, we hope to enroll our registry participants in a clinical trial for preventive treatments against synucleinopathies. Under certain circumstances, taking part in the NAPS study may initially require you to undergo clinical sleep study, also known as a polysomnogram, at a NAPS site to confirm the diagnosis of RBD. The study coordinator will let you know what may be required in your individual case. In such cases, your health insurance may be billed for that procedure.
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 search for information about sleep doctors near you.
We are very grateful for the large number of individuals who have expressed interest in participation and note that there may be a delay in enrolling new participants as we prioritize follow-up visits for our established participants. If you are interested in participating in NAPS, please ensure you have joined our registry.
If you are interested in other clinical trials for RBD, we encourage you to learn more about Parkinson's Progression Markers Initiative (PPMI), which is enrolling individuals with RBD, or search for “REM sleep behavior disorder” at clinicaltrials.gov.
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.
Other optional tests and procedures will be discussed if you enroll in the study.
You will be compensated for your time and effort.
Where is the study?
The NAPS Study is enrolling people with RBD at 9 sites across North America. NAPS Study participants must have idiopathic RBD, meaning that the RBD is not due to any known cause (such as narcolepsy or another neurological disorder).
Even if you live far from a NAPS Site but you are interested in participating, please contact us. If study requirements are met, we may be able to support travel to a research site.
