Rutgers University Study of the Genetics of Pulmonary Hypertension (RUGCC-PH)

Rutgers The State University of New Jersey

Status: Enrolling

Conditions: Pulmonary Arterial Hypertension Associated With Schistosomiasis (Disorder); Pulmonary Arterial Hypertension Associated With Connective Tissue Disease; Pulmonary Arterial and Chronic Thromboembolic Pulmonary Hypertension; Pulmonary Arterial Hypertension Associated With Connective Tissue Disease (Disorder); Pulmonary Arterial Hypertension of Congenital Heart Disease; Pulmonary Hypertension; Pulmonary Arterial Hypertension (PAH) (WHO Group 1 PH); Pulmonary Arterial Hypertension

Treatments: Other: Health surveys; Genetic: Saliva sample

Study type: Observational

Funder types: Other

Identifiers

NCT07217522

Pro2025001041

Details and patient eligibility

About

The goal of this observational study is to learn more about how genes impact the risk of pulmonary hypertension. Anyone 18 or older living in the US is eligible, and a diagnosis of PH is NOT required. Study participation is online, and it takes about 20 minutes to complete health surveys and request a saliva collection kit sent through US mail. In return, study participants may opt to receive information about their genetic ancestry at no cost.

Full description

This is an online research study to learn more about how genes affect the risk of pulmonary hypertension. No office visit is required and in return, participants may receive information about their genetic ancestry for free. Population-based echocardiography surveys show that pulmonary hypertension (PH) affects roughly 2-3 % of community-dwelling adults and becomes more common with age. This study will increase our understanding of the genetic basis of breast cancer, which is a crucial step in drug development to improve current treatment options. The study investigators seek a diverse population because diversity among participants maximizes the usefulness of the data. Participants will use our online study portal to answer questions about their health and provide their DNA via a saliva sample using a pre-paid mailer. Participation takes approximately 20 minutes. Participants will be invited to share data from their electronic health records, but this is not required for study participation. The study investigators keep participants engaged with short monthly newsletters.

Enrollment: 10,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• age 18 years or older
• currently living in the United States
• able to understand and follow written instructions in English
• have access to the internet and a computer, laptop, tablet or smart phone
• willing to provide written informed consent for participation
• willing to provide DNA via a saliva sample using a collection kit mailed to the study participant's home
• willing to complete a survey with questions about health related to the study of pulmonary hypertension.

Exclusion criteria

• Age 17 or below
• Not currently living in the United States
• Not able to participate in an online research study in English

Trial design

10,000 participants in 2 patient groups

Pulmonary hypertension cases

Description:

Study participants who have been diagnosed with any form of pulmonary hypertension, either currently or in the past.

Treatment:

Genetic: Saliva sample

Other: Health surveys

Pulmonary hypertension controls

Description:

Study participants who have not been diagnosed with any form of pulmonary hypertension, either currently or in the past.

Treatment:

Genetic: Saliva sample

Other: Health surveys