Parkinson's Research With Inclusion, Diversity and Equity

Parkinson Disease Clinical Trial

— PRIDE  

Official title:

Parkinson's Research With Inclusion, Diversity and Equity

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT05556993
• Other study ID #: UNLV-2021-265
• Status: Recruiting
• Start date: June 29, 2022
• Est. completion date: November 2024

Study information

• Verified date: October 2022
• Source: University of Nevada, Las Vegas
• Contact: Jason Flatt, PhD
• Phone: 702-895-5586
• Email: jason.flatt[@]unlv.edu
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 600
• Est. completion date: November 2024
• Est. primary completion date: April 2024
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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:

• 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

Related Conditions & MeSH terms

• Parkinson Disease

Locations

Country	Name	City	State
United States	University of Nevada, Las Vegas	Las Vegas	Nevada

Sponsors (1)

Lead Sponsor	Collaborator
University of Nevada, Las Vegas

Country where clinical trial is conducted

United States, 

References & Publications (3)

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.

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. Review. — View Citation

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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Depressive Symptoms	Depressive symptoms will be measured by Patient Health Questionnaire nine items, with higher scores indicating a higher frequency of depressive symptoms	Baseline
Primary	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	Baseline
Primary	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	Baseline
Primary	Cognition	Cognition is measured by Telephone Interview for Cognitive Status nine items, with lower scores indicating potential cognitive impairment	Baseline
Primary	Caregiver Burden	Caregiver Burden is measured by Zarit Caregiver Burden Inventory twelve items, with higher scores representing more burden	Baseline
Primary	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	Baseline