CClinicalTrials.gg
Status unknownNCT05556993PRIDEUpdated Oct 10, 2022

Parkinson's Research With Inclusion, Diversity and Equity

An observational study in Parkinson Disease, sponsored by University of Nevada, Las Vegas. Status unknown at 1 site in United States. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2022-10-10.

Sponsored by University of Nevada, Las Vegas · Observational

The sponsor has not verified this record recently (last verified Oct 2022), so the status shown — last known as Recruiting — may be out of date.
Study type
Observational
Model
Ecologic or community
Time perspective
Cross-sectional
Enrollment
600
Ages
18 Years and older
Sex
All
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Study summary

The purpose of this study is to identify the health and healthcare needs of LGBTQIA+ and non LGBTQIA+ communities living with Parkinson's disease.

Read the detailed description

Four million LGBTQIA+ adults age 50+ live in the U.S. Very little is known about the needs of the LGBTQIA+ community living with Parkinson's disease (PD). This research will work with the LGBTQIA+ community to learn about the health needs of those living with PD. The researchers will also talk to caregivers about their care experiences, and ask healthcare providers about their work with LGBTQIA+ communities living with PD. LGBTQIA+ adults have more health and care problems. This study will test if LGBTQIA+ adults with PD experience more health and care problems. This study will also see if caregivers have more problems and how providers are caring for the LGBTQIA+ community living with PD. LGBTQIA+ adults living with PD, caregivers and care providers will be asked to fill out a survey. Some caregivers will be asked to participate in an hour interview to learn about their experiences. Surveys and interviews can be done by phone or internet. The study will find ways to improve health and care of LGBTQIA+ people living with PD. The study will share findings so others can help to make care better for the LGBTQIA+ community.

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Conditions studied

  • Parkinson Disease

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Keywords

  • Parkinson's Disease
  • Caregiver
  • Health care provider
  • LGBTQIA+
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In context

Parkinson Disease

4,484 studies on the registry are indexed under Parkinson Disease; 1,081 are open to participants now.

This study's planned enrollment of 600 is above the median of 96 across 1,056 observational studies indexed under Parkinson Disease.

Browse Parkinson Disease studies →

Lead sponsor

University of Nevada, Las Vegas is the lead sponsor of 75 studies on the registry; 22 are open to participants now.

Of its 5 completed or terminated interventional studies of FDA-regulated products, 2 (40%) have results posted.

Counted across the registry records on this site, refreshed daily.

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Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

Study population includes individuals aged 18 and older who identify as lesbian, gay, bisexual, transgender, queer, intersex and/or another identity (LGBTQIA+) and non-LGBTQIA+ persons living with Parkinson's disease and their caregivers, as well as health care professional, including physicians, physician assistants, nurse practitioners, psychologists, physical or occupational therapists, registered nurses, social workers, and others, who provide care to persons living with Parkinson's disease.

Inclusion criteria

  • Identify as LGBTQIA+ or non-LGBTQIA+
  • Aged 18+
  • Ability to complete the phone or online survey in English/Spanish
  • Diagnosis of Parkinson's disease or a caregiver of a person with Parkinson's disease
  • Health care professional that provides care to patients living with Parkinson's disease

Exclusion criteria

Exclusion Criteria:

  • Not having a diagnosis of Parkinson's disease
  • Not currently or in the past a caregiver of a person with Parkinson's disease
  • Not currently providing care to patients with Parkinson's disease
  • Inability to complete the survey in English or Spanish
  • Inability to provide informed consent
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Study design

Observational model
Ecologic or community
Time perspective
Cross-sectional
Enrollment
600 participants (estimated)
Patient registry
No

Groups and cohorts

  • LGBTQIA+ Persons living with Parkinson's Disease

    125 LGBTQIA+ persons living with Parkinson's Disease will be asked to do a 45-minute phone survey.

  • Non- LGBTQIA+ Persons living with Parkinson's Disease

    125 Non- LGBTQIA+ persons living with Parkinson's Disease will be asked to do a 45- minute phone survey.

  • LGBTQIA+ caregivers of people living with Parkinson's Disease

    125 LGBTQIA+ caregivers of people living with Parkinson's Disease will do a 45-minute phone survey.

  • Non- LGBTQIA+ caregivers of people living with Parkinson's Disease

    125 non- LGBTQIA+ caregivers of people living with Parkinson's Disease will do a 45-minute phone survey.

  • Health care providers of people living with Parkinson's Disease

    100 health care providers of people living with Parkinson's Disease will complete a 45-minute online survey.

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What researchers measure

Primary outcomes

  1. Depressive Symptoms

    Depressive symptoms will be measured by Patient Health Questionnaire nine items, with higher scores indicating a higher frequency of depressive symptoms

    Time frame: Baseline

  2. Parkinson's Disease Symptoms

    Severity of Parkinson's Disease will be measured by Movement Disorder Society Unified Parkinson's Disease Rating Scale Parts one and two, with higher scores suggesting more severe Parkinson's disease symptoms

    Time frame: Baseline

  3. Health-related quality of life

    Quality of Life is measured by Parkinson's Disease Quality of Life Questionnaire Summary Index eight items, with higher scores indicating worse quality of life

    Time frame: Baseline

  4. Cognition

    Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment

    Time frame: Baseline

  5. Caregiver Burden

    Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden

    Time frame: Baseline

  6. Cultural Competency of Health Care Providers

    Cultural competency is measured by Lesbian, Gay, Bisexual, Transgender Development of Clinical Skills Scale eighteen items, with higher scores indicating higher levels of clinical preparedness and less prejudicial attitudinal awareness regarding LGBT patients

    Time frame: Baseline

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Study locations

1 of 1 sites recruiting
  • University of Nevada, Las Vegas
    Las Vegas, Nevada 89154, United States
    Recruiting
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References and documents

Publications

  • Lin CR, Rosendale N, Deeb W. Expanding sexual and gender minority research in movement disorders: More than awareness and acceptance. Parkinsonism Relat Disord. 2021 Jun;87:162-165. doi: 10.1016/j.parkreldis.2021.05.019. Epub 2021 May 24. PubMed 34088617 ↗
  • Rosendale N, Wong JO, Flatt JD, Whitaker E. Sexual and Gender Minority Health in Neurology: A Scoping Review. JAMA Neurol. 2021 Jun 1;78(6):747-754. doi: 10.1001/jamaneurol.2020.5536. PubMed 33616625 ↗
  • Anderson JG, Flatt JD. Characteristics of LGBT caregivers of older adults: Results from the national Caregiving in the US 2015 survey. Journal of Gay & Lesbian Social Services. 2018;30(2):103-116.
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Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Oct 10, 2022, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
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Registry details

Key details

Study ID
NCT05556993
Lead sponsor
University of Nevada, Las Vegas
Responsible party
Sponsor
First posted
Sep 27, 2022
Start date
Jun 29, 2022
Primary completion
Apr 2024 (estimated)
Completion
Nov 2024 (estimated)
Last update
Oct 10, 2022

Study contacts

Jason Flatt, PhD
Contact
jason.flatt@unlv.edu
702-895-5586
Jason Flatt, PhD
principal investigator · University of Nevada, Las Vegas

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is status unknown, as verified in Oct 2022. You cannot join it, but the record below documents what was studied.

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