University of Delaware Parkinson's Disease Registry

University of Delaware Participant Recruitment Registry for Parkinson's Disease Research

The purpose of this Parkinson's Disease Registry is to assist with recruitment of willing participants into future Parkinson's disease research studies at the University of Delaware.

Study Overview

• Status: Recruiting
• Conditions: Parkinson Disease

Detailed Description

There is an urgent need for Parkinson's Disease research due to its increasing global prevalence. Participant recruitment is a significant challenge to the success of Parkinson's disease research and we need your help more than ever in moving the field forward and improving the lives of people who have Parkinson's disease. Recruitment of study participants can be facilitated by maintaining registries of people who agree to be contacted for future studies.

The purpose of the University of Delaware Participant Recruitment Registry for Parkinson's Disease Research is to create a registry that includes the contact information and basic health information pertaining the participant's diagnosis of Parkinson's disease. The registry will streamline recruitment and enrollment in a variety of research studies focusing on topics such as, but not limited to: brain changes in Parkinson's disease, balance and gait in Parkinson's disease, exercise and its effect on motor function.

To be in the registry individuals must have a clinical diagnosis of Parkinson's Disease and have an interest in participating in research studies.

To become a member of this registry, primary information including contact information and some general medical information are needed.

• Study Type: Observational
• Enrollment (Estimated): 1000

Contacts and Locations

• Study Contact: Name: Roxana Burciu, PhD; Phone Number: 302-831-3066; Email: rgburciu@udel.edu

Study Locations

• United States
  • Delaware
    • Newark, Delaware, United States, 19713
      • Recruiting
      • University of Delaware
      • Contact: Roxana Burciu, PhD; Phone Number: 302-831-3066; Email: rgburciu@udel.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 21 years to 100 years (Adult, Older Adult)
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

Individuals who have a clinical diagnosis of Parkinson's disease and are interested in participating in Parkinson's disease research studies University of Delaware.

Description

Inclusion Criteria:

• Individual 21 years old or older
• A clinical diagnosis of Parkinson's disease
• Interest in participating in one or more investigator-led research studies at the University of Delaware

Exclusion Criteria:

• Individuals with a clinical diagnosis of parkinsonism that is not considered primary (e.g. vascular parkinsonism) or an atypical parkinsonian syndrome (e.g., progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration etc.)
• Clinical diagnosis of dementia

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Parkinson's Disease Diagnosis	By following up once a year, we will evaluate a participant's medical history to validate a diagnosis of Parkinson's Disease. A confirmed diagnosis of Parkinson's Disease is a criteria for continuing to be a part of the registry.	Once a year, at the beginning of the year

Collaborators and Investigators

• Sponsor: University of Delaware

Study record dates

Study Major Dates

• Study Start (Actual): May 28, 2020
• Primary Completion (Estimated): January 1, 2030
• Study Completion (Estimated): January 1, 2030

Study Registration Dates

• First Submitted: July 29, 2020
• First Submitted That Met QC Criteria: July 29, 2020
• First Posted (Actual): August 4, 2020

Study Record Updates

• Last Update Posted (Actual): May 16, 2024
• Last Update Submitted That Met QC Criteria: May 13, 2024
• Last Verified: May 1, 2024

More Information

Terms related to this study

• Keywords: Parkinson's Disease
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Parkinson Disease
• Other Study ID Numbers: 1535874

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No