Data and Specimen Requests

September 2025

Investigator: Stuart McCarter
Project Title:  Differences in clinical markers of neurodegeneration across the age spectrum of iRBD in NAPS
Date: 9/24/25
Request ID: 2025_19
Aim 1: Compare baseline objective measurements of cognitive, motor, autonomic and sensory functioning across iRBD patients stratified by age decades at enrollment
Aim 2: Compare phenoconversion risk stratified by age decade at enrollment in NAPS
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Investigator: Yo-El Ju
Project Title:  Targeting orexin signaling to prevent synucleinopathies
Date: 9/9/25
Request ID: 2025_17
Aim 1: Explore the impact of pharmacologic and genetic manipulation of the orexin pathway on α-synuclein fibril seeding and spreading
Aim 2: Determine the impact of pharmacologic and genetic manipulation of the orexin pathway on α-synuclein pathology in the A53T mouse synucleinopathy model.
Aim 3: Conduct a pilot clinical study to examine feasibility of DORAs in humans with RBD
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August 2025

Investigator: Jongmok Ha
Project Title:  Subjective Sleep Phenotyping and Sleep Perception Mismatch in isolated REM sleep behavior disorder: Associations with Cognitive Function, Dopaminergic Degeneration, and Cortical Structure in NAPS2 Cohort
Date: 8/1/25
Request ID: 2025_16
Aim 1: Examine the spectrum of subjective sleep phenotypes (hypersomnia, subjective normal, insomnia) in a cohort of patients with iRBD using self-reported instruments (e.g., ESS, RBDSSS, Mayo Sleep Questionnaire, SCOPA-SLEEP).
Aim 2: Quantify subjective sleep perception mismatch by comparing patient (PT)-reported sleep scales with bedpartner (BP)-reported scales.
Aim 3: Determine whether subjective sleep mismatch is associated with markers of neurodegenerative disease burden: (1) cognitive dysfunction, (2) apathy, (3) autonomic impairment, (4) dopamine transporter (DAT) depletion, and (5) cortical thinning.
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July 2025

Investigator: Jason Langley
Project Title:  Characterizing changes in nigral MK in RBD
Date: 7/8/25
Request ID: 2025_15
Aim 1: Characterize mean kurtosis in substantia nigra of RBD patients
Aim 2: Examine the relationship between nigral mean kurtosis and nigral iron.
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June 2025

Investigator: Ziv Gan-Or
Project Title:  Genome-wide association study of REM-sleep behavior disorder identifies new risk loci
Date: 6/10/25
Request ID: 2025_13
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Investigator: Stuart McCarter
Project Title:  Clinical comparisons of iRBD patients with subjective cognitive impairment compared with quantitative cognitive impairment
Date: 6/6/25
Request ID: 2025_14
Aim 1: Compare baseline subjective and objective measurements of motor and autonomic functioning as well as comorbidities in iRBD-SCI vs iRBD-QCI
Aim 2: Compare phenoconversion risk in iRBD-SCI vs iRBD-QCI
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May 2025

Investigator: Shady Rahayel
Project Title:  Investigating neurotranscrriptomics and connectomics signatures of structural MRI changes in isolated REM sleep behavior disorder from a computational neuroscience perspective
Date: 5/14/25
Request ID: 2025_12
Aim 1: To develop and validate multivariate MRI-based biomarkers that predict differential disease progression in individuals with isolated REM sleep behavior disorder (iRBD).
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April 2025

Investigator: Elijah Mak
Project Title:  NODDI Reveals white matter microstructural changes in isolated REM Sleep Behavior Disorder
Date: 4/10/25
Request ID: 2025_10
Aim 1: To characterize white and gray matter microstructural changes in iRBD participants using both conventional DTI metrics (FA, MD) and advanced NODDI parameters (NDI, ODI), while evaluating associations with clinical measures of cognition, motor performance, and RBD symptom severity. 
Aim 2: Sex differences in neuroimaging biomarkers and clinical correlates across the Lewy Body Disease Spectrum
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March 2025

Investigator: Mitchell Miglis
Project Title:  COVID and iRBD
Date: 3/25/25
Request ID: 2025_11
Aim 1: To examine the relationship between COVID infection status and the rate of phenoconversion in participants with iRBD.
Aim 2: Assess changes in test scores from cycle 1 to cycle 2 based on COVID infection status.
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Investigator: Roger Gunn
Project Title:  DAT imaging analysis support for 2024 NSD Endotypes RFP funded projects MJFF Grant ID: MJFFF-026370
Date: 3/11/25
Request ID: 2025_09
Aim 1: To provide a centralized analysis of DAT SPECT data from the NAPS Consortium funded through the MJFF 2024 NSD Endotypes RFP. Leveraging a single imaging analysis pipeline, which is the same analytical pipeline used by PPPMI, will help ensure confidence in comparison of results across these cohorts and PPMI.
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Investigator: Chengjie Xiong
Project Title:  Longitudinal change in functioning
Date: 3/5/25
Request ID: 2025_08
Aim 1: To compare rates of longitudinal change in cognitive outcome, motor outcome and others to assess their ability to serve as efficacy endpoints of a future clinical trial on RBD
Aim 2: To combine these outcome across domains longitudinally to optimize design of a future clinical trial
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Investigator: Yo-El Ju
Project Title:  Phenoconversion rates from RBD to overt synucleinopathies in the NAPS Consortium: effect of modifiable risk factors
Date: 3/5/25
Request ID: 2025_07
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Investigator: Yo-El Ju
Project Title:  Subjective versus objective olfactory dysfunction in RBD, and effect of COVID infection
Date: 3/5/25
Request ID: 2025_06
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November 2024

Investigator: Ronald Postuma
Project Title:  DATscan and motor function disconcordance
Date: 11/29/24
Request ID: 2024_08
Aim 1: To identify whether there are iRBD patients with a discordance between motor performances and abnormal nigrostriatal uptake, and to characterize those patients.
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Investigator: Michele Hu
Project Title:  Exploring the association and causal effect that Diabetes has on progression within iRBD and on conversion to neurodegenerative diseases
Date: 11/28/24
Request ID: 2025_04
Aim 1: Association between baseline motor and cognitive severity for iRBD patient with and without diabetes
Aim 2: Compare motor and cognitive progression for iRBD patients with and without diabetes
Aim 3: Quantify the effect diabetes has on conversion to PD (and possibly other diseases such as MSA/DLB)
Aim 4: Assess causal relationships for aims 1-2

September 2024

Investigator: Kevin Duff, Jonathan Elliott, & Miranda Lim
Project Title:  Cognitive changes in the NAPS cohort
Date: 9/3/24
Request ID: 2024_07
Aim 1: Examine cognitive changes across two time points in the entire NAPS cohort compared to normative data of change from NACC controls. Although we will initially focus on change from baseline to firsts follow-up, future analyses will explore cognitive change over longer periods of time.
Aim 2: Identify if subgroups of cognitive change are present in the NAPS cohort. Specifically, identify if there are rapid cognitive progressors, who may be the target off a cognitive intervention in this sample.
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June 2024

Investigator: Lee Neilson
Project Title:  Preparation of manuscript describing the association between pain and RBD in the NAPS 1/2 cohort
Date: 6/11/24
Request ID: 2024_06
Aim 1: To examine associations between RBD and the presence of pain from the NAPS 1/2 cohort
Aim 2: Examine participant characteristics in relation to existing prodromal risk calculators to assess validity and eventually, phenoconversion prediction rates.
Aim 3: Examine added predictive value of including PTSD, TBI, and pain as measures
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Investigator: Miranda Lim
Project Title:  Preparation of manuscript describing MRI visible perivascular space characteristics in the NAPS 1/2 cohort
Date: 6/11/24
Request ID: 2024_05
Aim 1: To examine perivascular space characteristics using MRI data from the NAPS 1/2 cohort
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May 2024

Investigator: Ronald Postuma
Project Title:  RBD Symptom Severity Scale in iRBD: descriptive analysis and relationship with NAPS outcomes
Date: 5/13/24
Request ID: 2024_03
Aim 1: To estimate the relationship between the RBDSSS and clinical and biomarker outcomes in the NAPS cohort
Aim 2: To evaluate how RBDSSS score changes over time
Aim 3: To determine if RBDSSS predicts phenoconversion
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March 2024

Investigator: Leah Forsberg
Project Title:  A Starkstein Apathy Scale comparison in the NAPS2 cohort
Date: 3/21/24
Request ID: 2024_02
Aim 1: To examine the similarities and differences between the participant and partner responses on the Starkstein Apathy Scale
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January 2024

Investigator: Mike Howell
Project Title:  The evolution of anxiety in RBD and its relationship to sleep and movement symptoms
Date: 1/17/24
Request ID: 2024_01
Aim 1: To examine the relationship between anxiety motor symptoms and sleep in isolated RBD NAPS participants.
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August 2023

Investigator: Donald Bliwise & Erik St. Louis
Project Title:  Examination of internal factor structure of Rapid Eye Movement Sleep without Atonia (RSWA) measures among patients with REM Sleep Behavior Disorder
Date: 8/21/23
Request ID: 2023_05
Aim 1: To rigorously and reliably quantify REM sleep without atonia
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March 2023

Investigator: Julie Fields
Project Title:  Algorithmic approach to detecting cognitive change in RBD
Date: 3/14/23
Request ID: 2023_03
Aim 1: To provide a preliminary description of the longitudinal cognitive performance sample of RBD participants utilizing a novel, clinically based diagnostic algorithm developed to assess cognitive status.
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January 2023

Investigator: Jonathan Elliott
Project Title:  Contribution of TBI and PTSD on neurologic outcomes in RBD
Date: 1/20/23
Request ID: 2023_01
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Investigator: Jonathan Elliott
Project Title:  Frequency of neurogenic orthostatic hypotension in RBD
Date: 1/20/23
Request ID: 2023_02
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November 2022

Investigator: Jonathan Elliott
Project Title:  NAPS-VETS: Contribution of OSA on neurologic function in RBD
Date: 11/8/22
Request ID: 2022_02
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June 2021

Investigator: Michael Howell
Project Title:  Incidence of SSRI antidepressant use and 5-HT RBD in NAOS
Date: 6/5/21
Request ID: 2021_03
Aim 1: Define the prevalence of SSRI use among NAPS subjects
Aim 2: Identify the prevalence of individuals who believe that SSRI use caused or exacerbated dream enactment (5-HT RBD) among NAPS subjects
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April 2021

Investigator: Parichita Choudhury
Project Title:  The utility of clinician global impression scale in RBD severity
Date: 4/28/21
Request ID: 2021_02
Aim 1: Determine the internal consistency and construct validity of the RBD severity scale questions (RBDSS)
Aim 2: Determine the correlations between patient and bed-partner estimate of severity on the RBD severity scale
Aim 3: Determine the concurrent validity of the Mayo sleep questionnaire and other sleep scales with CGI-C and RBDSS
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September 2020

Investigator: Julie Fields
Project Title:  Neuropsychological performance of participants enrolled in the North American Prodromal Synucleinopathy (NAPS) Consortium
Date: 9/1/20
Request ID: 2020_03
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July 2020

Investigator: Rebekah Summers
Project Title:  Quantitative limb bradykinesia in REM sleep behavior disorder
Date: 7/15/20
Request ID: 2020_02
Aim 1: To compare upper limb bradykinesia in terms of kinematic and eletrophyssiologic behavior in persons with REM sleep behavior disorder, age-matched controls and persons with Parkinson’s disease (using UMN data)
Aim 2: To examine individual profiles (RBD group only) of limb bradykinesia using clinical, quantitative, and standardized outcomes (using NAPS data).
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February 2020

Investigator: Jonathan Elliott
Project Title:  Baseline characteristics of NAPS cohort
Date: 2/5/20
Request ID: 2020_01
Aim 1: To describe the baseline characteristics of the collective NAPS data repository.
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January 2025

Investigator: Albert A. (Gus) Davis
Project Title:  Integrated analysis of CSF aSyn SAA in the North American Prodromal Synucleinopathy (NAPS) cohort
Date: 1/20/25
Request ID: 2025_02

October 2024

Investigator: Emmanuel Mignot
Project Title:  Genome wide association study (GWAS) on anti-IGLON5 disease
Date: 10/15/24
Request ID: 2025_01
Aim 1: To investigate genetic predispositions in patients with anti-IGLON5 disease.
Aim 2: To explore associations between specific immune-related genes and anti-IGLON5 disease.

March 2024

Investigator: Susan Criswell
Project Title:  Exposomics in RBD
Date: 3/15/24
Request ID: 2024_04
Aim 1: Using plasma samples from NAPS participants, we will perform targeted analysis of persistent exogenous environmental neurotoxicants including PCB, PBDE, and OCP panels complemented by untargeted exploratory analysis of exogenous compounds.
Aim 2: Using the same plasma samples from NAPS participants, we will perform untargeted metabolomics to identify metabolites that are associated with motor and cognitive outcomes and the rate of phenoconversion to synucleinopathies, followed by pathway analysis and molecular gatekeeper discovery methods to identify exposure-sensitive metabolites a biological conduits between the environmental exposures identified in Aim 1 and clinical outcomes.
Aim 3: We will conduct a case-only gene-environment interaction study in NAPS RBD participants. In this statistically powerful approach, we will examine whether environmental exposures in Aim 1 are associated with high-risk PD and DLB genotypes, the RBD PRS, and functional polymorphisms in ROS-related genes.

September 2022

Investigator: Susan Criswell
Project Title:  Exposomics in RBD
Date: 9/1/22
Request ID: 2022_01
Aim 1: Determine if RBD participants will demonstrate higher levels of environmental neurotoxins with suspected associations to synucleinopathies than individuals without RBD
Aim 2: Within RBD participants, determine if higher levels of environmental neurotoxins associated with synucleinopathies will be associated with higher rate of phenoconversion to symptomatic synucleinopathy
Aim 3: Within RBD participants, determine if higher levels of environmental neurotoxins associated with synucleinopathies will be associated with greater parkinsonism and cognitive impairment

October 2021

Investigator: Ronald Postuma
Project Title:  Anti-neuronal antibodies as a trigger of RBD
Date: 10/7/21
Request ID: 2021_04

January 2021

Investigator: Alon Avidan
Project Title:  Measurement of alpha-synuclein in CNS-originating exomes from persons at high risk for synucleinopathies
Date: 1/25/21
Request ID: 2021_01