University of Delaware Parkinson’s Disease Registry

Overview

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.

Full Title of Study: “University of Delaware Participant Recruitment Registry for Parkinson’s Disease Research”

Study Type

  • Study Type: Observational [Patient Registry]
  • Study Design
    • Time Perspective: Prospective
  • Study Primary Completion Date: January 1, 2030

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, have an interest in participating in research studies, and be willing to allow the Parkinson's Disease Team access to their medical history from their medical provider(s). To become a member of this registry, primary information including contact information and some general medical information from a health provider are needed. Medical information will be evaluated to confirm Parkinson's disease diagnosis and to determine if a potential participant is eligible to become a member of the registry.

Clinical Trial Outcome Measures

Primary Measures

  • Parkinson’s Disease Diagnosis
    • Time Frame: Once a year, at the beginning of the year
    • 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.

Participating in This Clinical Trial

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 – Willingness to allow the registry team to access to the medical history from the medical provider(s) that would confirm a clinical diagnosis of Parkinson's disease and provide basic health information that facilitate participant-study matching 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

Gender Eligibility: All

Minimum Age: 21 Years

Maximum Age: 100 Years

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • University of Delaware
  • Provider of Information About this Clinical Study
    • Principal Investigator: Roxana Burciu, Roxana Burciu, PhD – University of Delaware
  • Overall Contact(s)
    • Roxana Burciu, PhD, 302-831-3066, rgburciu@udel.edu

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