Parkinson's Research With Inclusion, Diversity and Equity (PRIDE)

Nevada System of Higher Education (NSHE)

Status: Enrolling

Conditions: Parkinson Disease

Study type: Observational

Funder types: Other

Identifiers

NCT05556993

UNLV-2021-265

Details and patient eligibility

About

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

Full 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.

Enrollment: 600 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

600 participants in 5 patient groups

LGBTQIA+ Persons living with Parkinson's Disease

Description:

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

Description:

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

Description:

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

Description:

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

Description:

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