Rutgers University Study of the Genetics of Pulmonary Hypertension
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Saliva sample, Health surveys.
- Who it may be relevant to
- Registry conditions: Pulmonary Hypertension, Pulmonary Arterial Hypertension, Pulmonary Arterial Hypertension (PAH) (WHO Group 1 PH), Pulmonary Arterial Hypertension Associated With Connective Tissue Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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.
Detailed 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.
Interventions
- Genetic Saliva sample
Saliva sample is sent via prepaid US Mail for DNA extraction - Other Health surveys
Health surveys are filled out online in the study portal.
Primary outcome measures
- Genetic risk variants associated with pulmonary hypertension [Time frame: 2 years]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Case-control
Study locations
United States · 1 center
- Rutgers University, Piscataway, New Jersey 08854 — Piscataway
Identifiers
NCT: NCT07217522 · Pro2025001041