RecruitingOBSERVATIONAL

PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

This project, called PVRI-GoDeep, is creating a large collection of health information for people with a condition called pulmonary hypertension (PH). It combines anonymised data, meaning your personal details are removed, from many local health registries across the globe. By bringing all this information together, doctors and scientists hope to get a much clearer picture of PH. They want to see if PH affects different groups of people in different ways, based on where they live or their background. The goal is to understand the disease more deeply and find better, more individualised ways to treat people living with PH.

At a glance

Status

Recruiting

Sponsor

University of Giessen

Enrolment target

40,000

Start

30 Jan 2020

Estimated completion

30 Jan 2055

Pulmonary Hypertension Global Health

What is this study about?

Imagine a big, secure online library filled with health information about people who have pulmonary hypertension (PH) from all over the world. That's essentially what PVRI-GoDeep is! It's an important project run by a group called the Pulmonary Vascular Research Institute (PVRI).

Doctors and researchers want to understand PH much better, and to do this, they need to look at lots of different cases. This project takes health information, like symptoms and treatment details, from various local health groups and puts it all together into one large database. Importantly, all the information is made anonymous, so your name and other personal details are not included. This helps protect your privacy while still allowing scientists to learn from your health journey.

By gathering this wide range of information, PVRI-GoDeep helps scientists spot patterns and differences in how PH affects people. For example, they might learn if PH behaves differently in people from certain areas of the world or from different backgrounds. The ultimate goal is to use this deeper understanding to develop more effective and personalised treatments for everyone living with PH.

Key takeaways

It's a global project collecting health data on pulmonary hypertension (PH).
All personal information is made anonymous for privacy.
Aims to improve understanding of PH across different groups of people.
Hopes to lead to better, more personalised treatments for PH patients.
You don't need to do anything extra; it uses existing medical records.

Who may be eligible?

This study is looking for health information from anyone who has been diagnosed with pulmonary hypertension (PH) by a doctor.

There are no specific reasons that would prevent your information from being included, as long as you have received a formal diagnosis of PH.

Your age doesn't matter, and it includes both men and women.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Have I been diagnosed with Pulmonary Hypertension?
Am I open to my anonymised health data being used for research?
Do I understand that my age and gender aren't a barrier?
Am I already part of a local health registry for PH?

Answer every question to see your result.

What does participation involve?

If you or your information is part of this study, it means your anonymised health details related to your pulmonary hypertension diagnosis are being gathered and added to a large database. The information comes from existing medical records held by local health registries you might already be part of. You won't need to attend any extra appointments, take any new medications, or have any additional tests specifically for this study. Your ongoing medical care for PH will continue as usual with your regular doctors. The study primarily involves collecting and analysing information that has already been recorded about your condition.

Potential risks and benefits

Being part of this study helps add to a global understanding of pulmonary hypertension, which could lead to better treatments for you and others in the future. The main benefit is supporting medical research that aims to improve care for people with PH. Since the study mainly uses existing, anonymised information, there are no direct physical risks to you. Your personal details are protected as the data is made anonymous. You have the right to ask your doctor if your information is included and if you can withdraw it at any time, although as the data is anonymised, withdrawing specific individual data might be complex once it's been added to the larger database.

Locations (1)

University Giessen PH Center
Verified postcode
Giessen, Germany· Recruiting

Common questions

What is pulmonary hypertension?

Pulmonary hypertension (PH) is a rare lung condition where the blood pressure in the arteries that go from your heart to your lungs is too high.

Will my personal details be shared?

No, all the health information included in this study is made anonymous. This means your name, address, and anything that could identify you are removed.

Do I need to do anything extra if my information is part of this study?

No, you don't need to do anything extra. This study uses information that's already in your medical records, so you won't have new appointments or tests.

How will this study help people with PH?

By collecting a lot of information, researchers hope to understand PH better and find new and improved ways to treat the condition, tailored to different people.

Who is running this study?

This study is run by the Pulmonary Vascular Research Institute (PVRI) and operated by the University of Giessen in Germany.

How to find out more

Raphael W Majeed

raphael.majeed@innere.med.uni-giessen.de +49 641 985 42502 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.