Observational Trials
An observational study is when researchers simply follow people during their usual care without assigning treatments, collecting information through medical records, surveys, or samples like blood or imaging to look for patterns and associations; these studies are important because they help researchers understand how diseases develop and what factors may influence outcomes.
PARKINSON’S DISEASE OBSERVATIONAL TRIALS
Biorepository of synucleinopathies & Development of Blood aSyn-SAA | Principal Investigator: Schiess & Soto
Status: Recruiting
Collection of blood, saliva, urine, and CSF from PD, DLB, MSA, and healthy patients
Inclusion: PD, DLB, MSA, iRBD, or Healthy control.
Exclusion: Platelet dysfunction, coagulopathy
Contact: Robert Ritter III, Research Assistant @ [email protected]
BLAAC PD
Black and African American Connections to Parkinson’s Disease | Principal Investigator: Chandra & Furr-Stimming
Status:Recruiting
Single-visit genetic research study of PD in African American communities
Inclusion: Self-identify as Black/African American, Age >18, Cases: PD diagnosis
Contact: Christian Henry Jackson, Research Coordinator @ [email protected]
Brain Health Equity Collaborative | Principle Investigator: Sharrief, Schiess, Chandra, & Onuigbo
Status: Recruiting
Focus groups to identify research participation barriers in PD, stroke, and VCI.
Inclusion: Self-identify as Black/African or Hispanic, Age >19.
Contact: Chiamaka Onuigbo, MD, Principal Investigator @ [email protected]
Understanding Barriers to Community Events in Parkinson’s Disease | Principal Investigator: Onuigbo
Status: Recruiting
Surveys on barriers and facilitators to PD community event participation.
Inclusion: Adults with PD who live in the Houston metropolitan area
Contact: Chiamaka Onuigbo, MD, Principal Investigator @ [email protected]
Dementia Study | Principal Investigator: Ternent & Rodarte
Status: Recruting
Patients with early dementia, using an app that provides visualization of their journey.
Inclusion: Early dementia, able to understand and use app.
Contact: Elsa Rodarte, MD, Co-investigator @ [email protected]
PSR: Post-Market Registry of the effectiveness of Medtronic market-released products
Principal Investigators: Schiess & Rodarte
Status: Recruiting
Worldwide database with performance and safety information on Deep Brain Stimulation.
Inclusion: Patients with Medtronic DBS BEFORE surgery day
Contact: Elsa Rodarte, MD, Co-investigator @ [email protected]
PD GENEration | Principal Investigator: Chandra & Furr Stimming
Status: Site activation
Study that provides genetic testing and counseling for people diagnosed with PD.
Inclusion: Age >18, PD diagnosis
Contact: Christian Henry Jackson, Research Coordinator @ [email protected]
HUNTINGTON’S DISEASE OBSERVATIONAL TRIALS
Change-HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Observational study evaluating brain development in ages 6-30 with family history of Huntington’s disease.
Inclusion: HD or at risk of HD, aged 6-30yrs
Exclusion: History of conditions that could affect brain structure/function (Prematurity, birth trauma, major head trauma, seizure, brain tumors, brain surgery)
Contact: Brittany Duncan, Research Coordinator @ [email protected]
HD-Clarity | Principal Investigator: Furr-Stimming
Status: Recruiting
Study to generate a CSF sample collection for biomarker development in Huntington’s disease.
Inclusion: age 11–75, Cohorts: healthy controls, pre-manifest HD, manifest HD (early–advanced), juvenile HD, incomplete penetrance, Genetic criteria: CAG expansion (≥40 for HD; 36–39 for incomplete penetrance; <36 for controls with family history)
Exclusion: Recent investigational drug, drug/alcohol abuse, unstable meds, antiplatelet/anticoagulant therapy, clotting disorder, abnormal blood tests, prior LP complications
Contact: Rithica Deepak, Research Coordinator @ [email protected]
Enroll-HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Worldwide observational study of Huntington’s families to monitor disease progression.
Inclusion: HD mutation carriers, relatives, family members, community control, age ≥18 (or <18 if clinically diagnosed + positive test)
Exclusion: chorea with negative HD test, community controls with major CNS disorder (e.g., stroke, PD, MS).
Contact: Rithica Deepak, Research Coordinator @ [email protected]
Dysautonomia in HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Trial to evaluate autonomic nervous system function in HD and its correlation with motor and cognitive impairment.
Inclusion: age≥18, Clinical or genetic diagnosis of HD
Exclusion: HD-phenocopies, history of diabetes, heart failure/arrhythmia, thyroid/ parathyroid disorders, use of pacemaker, use of: cholinesterase antagonists, anticholinergics, sympathomimetics, and adrenoreceptor antagonists
Contact: Ali Zare Dehnavi, Postdoctoral Research Fellow @ [email protected]
Dysphagia-HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Observational study of dysphagia in HD and the effect of VMAT2 inhibitors and dopamine receptor antagonists on swallowing.
Inclusion: age≥18, Clinical diagnosis of HD, On VMAT2 inhibitor and/or dopamine receptor antagonist
Exclusion: HD-phenocopies, Other major causes of dysphagia (e.g., ALS, stroke, head/neck cancer), PEG only feeding, Recent major medication changes affecting swallowing, Other interventional trial participation
Contact: Ali Zare Dehnavi, Postdoctoral Research Fellow @ [email protected]
Microbiome in HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Repository collecting blood, biological samples (stool), and clinical data from patients with Huntington disease for future research studies.
Inclusion: Clinical or genetic diagnosis of HD
Exclusion: Unable to consent
Contact: Karina Moreira Sassi, Research Assistant @ [email protected]
Sens-HD | Principal Investigator: Furr-Stimming
Status: Recruiting
Observational study analyzing sensory processing patterns in individuals with genetically confirmed Huntington’s disease using the Adolescent/Adult Sensory Profile (AASP).
Inclusion: age≥20, genetic diagnosis of HD
Exclusion: Unable to complete the 60-item sensory profile questionnaire, unable to provide informed consent
Contact: Sara E. McMahan @ [email protected]
Loneliness & Social Engagement | Principal Investigator: Furr-Stimming
Status: Recruiting
Observational study evaluating how loneliness and social engagement affect clinical outcomes and disease progression in patients with movement disorders including Huntington disease.
Inclusion: age≥18, diagnosis of HD
Exclusion: Uncontrolled psychiatric illness, Substance or alcohol abuse, MoCA <18 or unable to consent, Unable to tolerate extended clinic visit
Contact: Karina Moreira Sassi, Research Assistant @ [email protected]
Olfactory Dysfunction in HD | Principal Investigator: Furr-Stimming
Status: Active, not recruiting
Observational study evaluating olfactory dysfunction in Huntington’s disease and its correlation with motor, cognitive, and behavioral symptoms.
Inclusion: Age 18–75, Clinical or genetic diagnosis of HD
Exclusion: Nasal/sinus disease or current upper respiratory infection, History of COVID-19 infection, Head trauma affecting smell, Other neurodegenerative diseases (e.g., PD, AD, MS), Prior head/neck radiation or brain tumors, MoCA <18
Contact: Karina Moreira Sassi, Research Assistant @ [email protected]