Enroll the Study
PH Study

Research Study of the Genetics
of Pulmonary Hypertension

Pulmonary hypertension is rare. Research shouldn't be.

You're here because you want to help lead the next generation of PH research.

Three ways you can help

Display the materials

Place the enclosed materials where your patients can see them.

Reach patients thru EHR

Share the study through your organizations EHR to inform as many patients as possible.

Bring it up when it fits naturally in conversation.

Mentionthe study

Waiting Room Poster

Bulletin board or framed wall spot.

Take-Home Flyer

Everything you need to introduce the study to your patients.

EHR onboarding

I can make a pdf but i'll need a kind of guide for this..probably each ehr will work differently?

Everything you need to share this research opportunity with patients.

Materials library
Things clinicians ask us
What is the Research Study of the Genetics of Pulmonary Hypertension
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.
Who runs it?
The program is run by the study team at Rutgers — principal investigator Dr. Tara Matise — in partnership with the PHA Association. The Regeneron Genetics Center is the collaborating lab for genetic sequencing.
Can my practice receive patient-level data?
No, not through this program. Practices that want or require a limited set of individual-level data may pursue a deeper integration by contacting us at rugcc-ph@rutgers.edu
Is this an interventional clinical trial?
No, the Rutgers study is an observational genetics study, not an interventional clinical trial. Participants provide a saliva sample and answer online surveys. They do not receive an investigational drug or device. The study is registered on ClinicalTrials.gov
Is my practice paid for participating?
No. There is no payment, royalty, or financial benefit to partners or their practices for patient referrals or any other program activity. This is intentional and non-negotiable — paying for patient referrals to research would raise serious ethical and regulatory concerns.
Can I adapt or create my own materials?
No — the materials are IRB-approved and can't be altered or replicated independently. If you need a variant for your practice (different language, size, or co-branding), email rugcc-ph@rutgers.edu and we'll evaluate.
What is the Research Study of the Genetics of Pulmonary Hypertension

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.

Who runs it?
The program is run by the study team at Rutgers — principal investigator Dr. Tara Matise, PhD — in partnership PHA Association. The Regeneron Genetics Center is the collaborating lab for genetic sequencing
Can my practice receive patient-level data?
No, not through this program. Practices that want or require a limited set of individual-level data may pursue a deeper integration by contacting us at rugcc-ph@rutgers.edu.
Is this an interventional clinical trial?

No, the Rutgers study is an observational genetics study, not an interventional clinical trial. Participants provide a saliva sample and answer online surveys. They do not receive an investigational drug or device. The study is registered on ClinicalTrials.gov

Is my practice paid for participating?

No. There is no payment, royalty, or financial benefit to partners or their practices for patient referrals or any other program activity. This is intentional and non-negotiable — paying for patient referrals to research would raise serious ethical and regulatory concerns.

Can I adapt or create my own materials?
No — the materials are IRB-approved and can't be altered or replicated independently. If you need a variant for your practice (different language, size, or co-branding), email rugcc-ph@rutgers.edu and we'll evaluate.
The pulmonary hypertension genetics research gap

At the Rutgers University Genetics Coordinating Center, we're building the largest PH genetics dataset to date to study the genetics of all groups of PH — and no one can reach them like you can.

The last major PH genetics study was published 8 years ago — with only 2,000 cases, almost entirely from Group 1 PAH. That left four of the five clinical groups largely unstudied.

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