Recruiting · registry status

Building a long-term record of Parkinson’s and other movement conditions

Researchers collect information about symptoms, thinking, treatments and family history, alongside samples, to support studies of movement conditions.

Learning by observing or collecting information · Study reference: NCT04997642

Plain-language introduction written with AI from the registry; not independently checked by a clinician. Read the original details below ↓

This registry record was last updated over six months ago, or its update date is missing. Recruitment may have changed. Confirm with the team before making plans.

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Looking for volunteers

Start (reported actual date): 2019-09-30
Main measurements finished (planned): 2029-09-15
Study finished (planned): 2029-09-15

Planned dates can move. A study finishing does not tell us when a paper will be published.

No results summary has been confirmed in the registry records we imported. See connected papers below; we keep checking after recruitment ends.

Changes we have recorded

2026-10-11 — recruiting

These are dates we observed a change, not necessarily the dates it happened.

Papers connected to this study

No connected paper has been found yet. The tracker checks the growing library for study identifiers and registry-linked publications.

Who can join?

Age 18 years and over · Does not accept healthy volunteers

These are starting points, not the full rules. The research team can tell you whether the study is right for your situation.

Read all the rules for taking part

Sex eligibility reported by registry: all

Inclusion Criteria: Any person who receives medical care for the diagnosis of Parkinson's disease with mild cognitive impairment (MCI) or dementia may be eligible to participate in the research database. There are no limitations for database participation based on age, disease severity or presence of cognitive impairments, as long as the person is able to complete the research assessments. Exclusion Criteria: Absence of Parkinson's disease diagnosis. There are no limitations for database participation based on age, disease severity or presence of cognitive impairments, as long as the person is able to complete the research assessments.

Full study name & original research details

Official study title

Parkinson's Disease and Movement Disorders Clinical Database

Original description

Further description from the registry

The research database contains demographic and family history information, longitudinal information on the clinical symptoms, neuropsychological profile and treatments, stored biological samples, and brain images of patients with Parkinson's disease and related disorders receiving care at the Parkinson's disease and Movement Disorders Center (PDMDC) and the Hospital of the University of Pennsylvania. The purpose of the research database is to have a comprehensive source of data that can be used for educational, research and patient care projects at the PDMDC. These data may be used for any study examining the relationship between treatment and clinical symptoms of patients with PD and related disorders. The main uses of the data are to: * Determine the long term effects of Parkinson's disease and related conditions, including predictors of its motor and non-motor symptoms * Identify genetic and other neurobiological factors related to the risk of developing Parkinson's disease and related disorders and their course * Improve our understanding of how best to identify, diagnose, and manage motor and non-motor symptoms of Parkinson's disease and related conditions Evaluate biological markers of disease or response to therapy * Identify patients who may be candidates for participation in trials of new medications. * Identify patients who may be interested in participating in educational or developmental activities Participants are seen annually for the first 4 years, biennially thereafter. The participants continue in the study until study end, withdrawal, or death on study.

Conditions reported: Parkinson Disease; Parkinson Disease Dementia; Lewy Body Parkinson Disease; Lewy Body Dementia With Behavioral Disturbance

Registry records for this study

Records are joined using registration identifiers. Titles alone do not establish that two studies are the same.

ClinicalTrials.gov · NCT04997642 ↗ — RECRUITING; checked 2026-10-13
ClinicalTrials.gov · NCT04997642 ↗ — Recruiting; WHO ICTRP processed 2025-10-13; checked 2026-10-13

Study type: Observational
Interventions: neuropsychiatric and cognitive testing questionnaires
Phases: Not reported
Sponsor: University of Pennsylvania
Start date reported by registry: 2019-09-30 (actual)

Registry updated: 2025-10-07 · Status last verified by the registry submitter: 2025-10

Registry records retrieved 2026-10-13 (UTC). Individual records may have older updates. Recruitment and eligibility must be confirmed with the study team.

Contact the research team

Public study contacts supplied to the registry. Ask whether recruitment is still open and what participation involves.

Eugenia Mamikonyan · 215-615-3085 · eugenia.mamikonyan@pennmedicine.upenn.edu

Study locations

Site status can differ from overall study status. “Status not reported” means local availability needs confirmation. Remote participation and travel arrangements must be checked with the team.

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Recruiting

Sarah Shaw · 215-615-0838 · sarah.shaw@pennmedicine.upenn.edu

Gina Mamikonyan · 215-615-3085 · eugeniam@pennmedicine.upenn.edu

Facility not reported

United States

Status not reported

The original descriptions and participation rules come from the registry. Participation is voluntary and does not guarantee benefit.