PVRI GoDeep - Global Deep Phenotyping PH Registry

Overview

GoDeep - PVRI Global Deep Phenotyping PH Registry

GoDeep is a deep phenotyping pulmonary hypertension (PH) meta-registry, integrating the data acquired in all PH disease groups from PH referral centers worldwide and spanning all continents. GoDeep is an initiative that was co-founded by the Pulmonary Vascular Institute (PVRI) and the Justus Liebig University Giessen in Giessen, Germany; and is overseen as a project of the Institute for Lung Health (ILH) in Giessen, Germany. Data are acquired from participating centers using a parameter framework that has been agreed upon by all centers, and anonymized data are transferred from the respective centers to a central coordination office at the ILH, in line with guidelines established by the relevant regulatory authorities.

Data Flow from Entry to Usage

The GoDeep registry provides very rich datasets that allow for the evaluation of a multitude of epidemiological and scientific questions, which demands an appreciable number of enrollees, that suitably represent the broad geographical and ethnic spectrum of PH. A highly qualified team of statisticians and information technologists ensures the necessary quality control processes and statistical evaluation of the data sets.

Key Features

Database

Participants

Publications

About us

Key Features

Key Features as of date

Number of PH patients	> 32,000
Comparator Subjects without PH	> 3,000
Data Points	> 8,000,000
Number of parameters/variables	350
PH diagnosis class WSPH 2013/2018 and/or WSPH 2024	✓
WHO functional class PH	✓
Comorbidities	✓
Survival & cause of death	✓
Right heart catheterization (mandatory for registry entry)	✓
Spiroergometry	✓
Echocardiography	✓
6-minute walk test	✓
Lung function test	✓
PH specific drug therapy	✓
Imaging methods MRI / Chest CT	✓
Availability of bio samples	✓

Distribution of PH groups of the entire current GoDeep cohort

Distribution of mPAP of the entire current GoDeep cohort

Database

Phenotyping parameters

Our database contains up to 350 different parameters per patient consultation/visit. All parameters are annotated with international standard terminology codes (such as those provided by the Logical Observation Identifiers Names and Codes, LOINC, and the Systematized Nomenclature of Medicine-Clinical Terms, SNOMED-CT, databases). A detailed list of parameters is provided below.

Data protection

Data processing conforms to the current standard of General Data Protection Regulation of the European Union. Prior to transfer to the PVRI GoDeep registry, all data are anonymized using k-anonymization, which is overseen by local the data protection officers affiliated with each center.

Database and analysis tools

The storage of all observational data conforms to the OMOP common data model (CDM). For data analyses, complex algorithms and statistical calculations can be run either directly on the OMOP CDM or on data extracts that are supplied by the GoDeep team. Additionally, simple analysis tools are available via web browser to all members.

List of parameters: these include mandatory, essential, recommended and extended parameter sets:

Ebene 1	Ebene 2	Ebene 3	Ebene 4
Personal data	Birth decade
Personal data	Sex
Personal data	Ethnic group	Caucasian
Personal data	Ethnic group	Hispanic
Personal data	Ethnic group	Black
Personal data	Ethnic group	Asian
Personal data	Ethnic group	Other
Personal data	Deceased number of months after diagnosis
Personal data	Survival status	alive
Personal data	Survival status	deceased
Personal data	Cause of death	Heart failure
Personal data	Cause of death	Malignant disease
Personal data	Cause of death	Renal failure
Personal data	Cause of death	Pulmonary infect
Personal data	Cause of death	Right heart decompensation
Personal data	Cause of death	Respiratory insufficiency
Personal data	Cause of death	Sepsis/MODS/SIRS/multi organ failure
Personal data	Cause of death	Transplantation
Personal data	PH Family History
Personal data	Transplantation Date
Diagnosis	Age at diagnosis
Diagnosis	Date of diagnosis (decade)
Diagnosis	Date of onset of PH self-reported months before diagnosis
Diagnosis	Date of onset of underlying disease prior to development of PH
Diagnosis	PH diagnosis class (WS2013 Nice, WS2008 Dana Point)
Diagnosis	Comorbidities	Coronary heart disease
Diagnosis	Comorbidities	Arterial hypertension
Diagnosis	Comorbidities	Venous thromboembolism
Diagnosis	Comorbidities	Diabetis mellitus
Diagnosis	Comorbidities	Thyroid disease
Diagnosis	Comorbidities	Obstructive sleep apnoea
Diagnosis	Comorbidities	Atrial fibrillation
Diagnosis	Comorbidities	Parenchymal lung disease / Interstitial Lung Disease
Diagnosis	Comorbidities	COPD
Diagnosis	Comorbidities	Asthma
Diagnosis	Comorbidities	COVID 19
Follow-up	Visit in number of months since diagnosis
Follow-up	WHO functional class (also NYHA)
Follow-up	Body weight
Follow-up	Body height
Follow-up	BMI (calculated)
Follow-up	Body surface area (BSI, calculated)
Follow-up	Smoking status	Active smoker
Follow-up	Smoking status	Ex-smoker
Follow-up	Smoking status	Never-smoker
Follow-up	Smoking status	Packyears
Follow-up	Visit reason	Hospitalization due to worsening of PH
Follow-up	Visit reason	Regular / planned viist
Right heart catheterization (follow up)	Date in number of months since diagnosis
Right heart catheterization (follow up)	mPAP
Right heart catheterization (follow up)	sPAP
Right heart catheterization (follow up)	dPAP
Right heart catheterization (follow up)	mSAP
Right heart catheterization (follow up)	dSAP
Right heart catheterization (follow up)	sSAP
Right heart catheterization (follow up)	Heart rate
Right heart catheterization (follow up)	PAWP
Right heart catheterization (follow up)	LVEDP
Right heart catheterization (follow up)	CVP
Right heart catheterization (follow up)	SVR
Right heart catheterization (follow up)	PVR	PVR by Fick method
Right heart catheterization (follow up)	PVR	PVR by thermo dilution
Right heart catheterization (follow up)	CI	CI by Fick method
Right heart catheterization (follow up)	CI	CI by thermo dilution
Right heart catheterization (follow up)	CO	CO by Fick
Right heart catheterization (follow up)	CO	CO by thermo dilution
Right heart catheterization (follow up)	PVRI	PVR Index by Fick
Right heart catheterization (follow up)	PVRI	PVR Index by thermo dilution
Right heart catheterization (follow up)	Pulmonary artery blood SO2
Right heart catheterization (follow up)	Oxygen saturation
Right heart catheterization (follow up)	Peripheral saturation
Spiroergometry	Date in number of months since diagnosis
Spiroergometry	VO2 max/kg
Spiroergometry	min EQCO2
Spiroergometry	Slope VE/VCO2
Spiroergometry	Maximum oxygen pulse
Spiroergometry	PETCO2
Spiroergometry	Heart Rate peak
Spiroergometry	VO2 peak
Spiroergometry	VO2 peak %pred
Spiroergometry	VO2 AT
Spiroergometry	VCO2 peak
Spiroergometry	VE peak
Spiroergometry	VE AT
Spiroergometry	MBB
Spiroergometry	Systolic BP peak
Spiroergometry	Diastolic BP peak
Spiroergometry	SPO2 at rest
Spiroergometry	SpO2 peak
Echocardiography	Date in number of months since diagnosis
Echocardiography	RA area in cm2
Echocardiography	RA dilation
Echocardiography	LA area in cm2
Echocardiography	LA dilation
Echocardiography	TAPSE in mm
Echocardiography	TDI velocity (S prime/dash)
Echocardiography	sPAP in mm incl CVP
Echocardiography	CVP
Echocardiography	ESA
Echocardiography	EDA
Echocardiography	FAC% of total area of right ventricle
Echocardiography	Pericardial effusion
Echocardiography	Tricuspid Regurgitation
Echocardiography	Mitral Regurgitation
Echocardiography	Aortic Regurgitation
Echocardiography	Pulmonic Regurgitation
Electrocardiography	Date in number of months since diagnosis
Electrocardiography	Sinus rhyth normal
Electrocardiography	Cardiac arrhythmia	Atrial arrhythmia	Atrial fibrillation
Electrocardiography	Cardiac arrhythmia	Atrial arrhythmia	Atrial flutter
Electrocardiography	Cardiac arrhythmia	Ventricular arrhythmia
Electrocardiography	RV strain
Electrocardiography	Right atrial enlargement
Electrocardiography	Right bundle branch block (RBBB)
6 minute walk test	Date in number of months since diagnosis
6 minute walk test	Distance walked	In meters
6 minute walk test	Distance walked	In feet
6 minute walk test	Exercise prematurely interrupted	Minutes walked before interruption
6 minute walk test	Oxygen saturation at end of 6mwt
6 minute walk test	Oxygen saturation at rest / before 6mwt
6 minute walk test	Supplemental oxygen L/min
6 minute walk test	Borg dyspnea scale at rest / before 6MWT
6 minute walk test	Borg dyspnea scale at end of 6MWT
Laboratory tests	Date in number of months since diagnosis
Laboratory tests	BNP
Laboratory tests	NT-proBNP
Laboratory tests	GGt
Laboratory tests	Uric acid
Laboratory tests	Hemoglobin
Laboratory tests	Iron
Laboratory tests	CRP
Laboratory tests	Creatinine
Laboratory tests	ALT
Laboratory tests	AST
Laboratory tests	Total Bilirubin
Laboratory tests	Sodium
Laboratory tests	Total protein
Laboratory tests	Albumin
Laboratory tests	INR
Laboratory tests	WBC
Laboratory tests	Platelets
Laboratory tests	Alkaline phosphatase
Laboratory tests	Estimated glomerular filtration rate
Blood gas analysis (BGA)	Date in number of months since diagnosis
Blood gas analysis (BGA)	paO2
Blood gas analysis (BGA)	paCO2
Blood gas analysis (BGA)	Supplementary oxygen (yes/no)	Supplementary oxygen in l/min
MRI imaging measurements	Date in number of months since diagnosis
MRI imaging measurements	Heart rate
MRI imaging measurements	RVEDV
MRI imaging measurements	RVESV
MRI imaging measurements	RV mass
MRI imaging measurements	RV EF
MRI imaging measurements	LVEDV
MRI imaging measurements	LVESV
MRI imaging measurements	LV mass
MRI imaging measurements	LVEV
Chest CT
V/Q scan
Quality of Life	Date in number of months since diagnosis
Quality of Life	SF36 Questionnaire
Quality of Life	emPHasis-10 Questionnaire	Frustrated by breathlessness
Quality of Life	emPHasis-10 Questionnaire	Breathlessness interrupts conversations
Quality of Life	emPHasis-10 Questionnaire	PH controls life
Quality of Life	emPHasis-10 Questionnaire	Need rest during day
Quality of Life	emPHasis-10 Questionnaire	Feeling exhausted
Quality of Life	emPHasis-10 Questionnaire	Having no energy
Quality of Life	emPHasis-10 Questionnaire	Breathless after on flight of stairs
Quality of Life	emPHasis-10 Questionnaire	Confidence in public places
Quality of Life	emPHasis-10 Questionnaire	Being dependent
Quality of Life	emPHasis-10 Questionnaire	Feeling like a burden
Quality of Life	SGRQ Saint Georges Respiratory Questionnaire
Quality of Life	UCSD - SOBQ (Universal Shortness Of Breath Q)
Quality of Life	PGIS (Physicians Global Impression for Symptoms)
Quality of Life	PGIC Physicians Global Impression for Change
Quality of Life	PROMIS Questionnaire for Physical Function
Lung function	Date in number of months since diagnosis
Lung function	FEV1	Absolute value
Lung function	FEV2	Predicted value
Lung function	FEV3	%predicted value
Lung function	FVC	Absolute value
Lung function	FVC	Predicted value
Lung function	FVC	%predicted value
Lung function	TLC	Absolute value
Lung function	TLC	Predicted value
Lung function	TLC	%predicted value
Lung function	RV	Absolute value
Lung function	RV	Predicted value
Lung function	RV	%predicted value
Lung function	DLCO/VA	Absolute value
Lung function	DLCO/VA	Predicted value
Lung function	DLCO/VA	%predicted value
Lung function	DLCO adj Hgb
Lung function	DLCO	Absolute value
Lung function	DLCO	Predicted value
Lung function	DLCO	%predicted value
Lung function	VA	Absolute value
Lung function	VA	Predicted value
Lung function	VA	%predicted value
Lung function	VC	Absolute value
Lung function	VC	Predicted value
Lung function	VC	%predicted value
Lung function	FEV1/FVC	Absolute value
Lung function	FEV1/FVC	Predicted value
Lung function	FEV1/FVC	%predicted value
Schistosomiasis Liver Ultrasound	Date in number of months since diagnosis
Schistosomiasis Liver Ultrasound	Does the test show periportal fibrosis
Schistosomiasis Liver Ultrasound	Does the test show enlargement of the left lobe or liver
Schistosomiasis Liver Ultrasound	Summary of additional results
Schistosomiasis Diagnosis	Has schistosomiasis ever been diagnosed
Schistosomiasis Diagnosis	Appoximate age of first infection	Unknown
Schistosomiasis Diagnosis	Appoximate age of first infection	As a child (<13 yo)
Schistosomiasis Diagnosis	Appoximate age of first infection	As a teenager (13-19 yo)
Schistosomiasis Diagnosis	Appoximate age of first infection	As an adult (>19 yo)
Schistosomiasis Diagnosis	Appoximate age of first infection	Specify the approximate date
Schistosomiasis Diagnosis	Date of first infection in months after/before PH diagnosis (if known)
Schistosomiasis Diagnosis	Is there a positive test for schistosomiasis
Schistosomiasis Diagnosis	Approximate age at the first positive test
Schistosomiasis Diagnosis	Test method of diagnosis	Unknown
Schistosomiasis Diagnosis	Test method of diagnosis	Kato-katz test
Schistosomiasis Diagnosis	Test method of diagnosis	Rectal biopsy
Schistosomiasis Diagnosis	Test method of diagnosis	Rectal biopsy
Schistosomiasis Diagnosis	Test method of diagnosis	Urine CCA study
Schistosomiasis Diagnosis	Location where schistosomiasis exposure may have occurred
Schistosomiasis Diagnosis	Exposure duration in years
Schistosomiasis Diagnosis	Were there ever been a diagnosis associated with portal hypertension	Date of portal hypertension associated diagnosis
Schistosomiasis Diagnosis	Activities associated with schistosomiasis	Fishing
Schistosomiasis Diagnosis	Activities associated with schistosomiasis	Washing
Schistosomiasis Diagnosis	Activities associated with schistosomiasis	Swimming
Schistosomiasis Diagnosis	Activities associated with schistosomiasis	Other activities
Schistosomiasis Diagnosis	Treatment	Was there any treatment for schistosomiasis?
Schistosomiasis Diagnosis	Treatment	What was the first drug to treat schistosomiasis?
Schistosomiasis Diagnosis	Treatment	Approximate age at the time of treatment	As a child (<13 yo)
Schistosomiasis Diagnosis	Treatment	Approximate age at the time of treatment	As a teenager (13-19 yo)
Schistosomiasis Diagnosis	Treatment	Approximate age at the time of treatment	As an adult (>19 yo)
Schistosomiasis Diagnosis	Treatment	Approximate age at the time of treatment	Specify the approximate date
Schistosomiasis Diagnosis	Treatment	Date when treatment began (if known)
Schistosomiasis Diagnosis	Conditions associated with schistosomiasis	Esophageal varicies	Date of diagnosis of esophageal varicies (if known)
Schistosomiasis Diagnosis	Conditions associated with schistosomiasis	Splenomegaly	Date of diagnosis of splenomegaly (if known)
Schistosomiasis Diagnosis	Conditions associated with schistosomiasis	Dilation of the portal vein	Date of diagnosis of dilation of the portal vein (if known)
Genetic Analysis	Date in number of months since diagnosis
Genetic Analysis	Mutation status	BMPR2
Genetic Analysis	Mutation status	ACVRL1
Genetic Analysis	Mutation status	ENG
Genetic Analysis	Mutation status	SMAD1
Genetic Analysis	Mutation status	SMAD4
Genetic Analysis	Mutation status	SMAD9
Genetic Analysis	Mutation status	CAV1
Genetic Analysis	Mutation status	KCNK3
Genetic Analysis	Mutation status	EIF2AK4
Genetic Analysis	Mutation status	SOX17
Genetic Analysis	Mutation status	GDF2
Genetic Analysis	Mutation status	ATP13A3
Genetic Analysis	Mutation status	AQP1
Genetic Analysis	Mutation status	KDR
Genetic Analysis	Mutation status	TBX4
Biomaterial availability	Date in number of months since diagnosis
Biomaterial availability	Specimen type	Serum available
Biomaterial availability	Specimen type	Plasma available
Biomaterial availability	Specimen type	Whole blood available
Biomaterial availability	Specimen type	Urine available
Medication/PH specific drug therapy	Start drug treatment (number of months since diagnosis)
Medication/PH specific drug therapy	Stop drug treatment (number of months since diagnosis)
Medication/PH specific drug therapy	Calcium channel antagonists	Amlodipine
Medication/PH specific drug therapy	Calcium channel antagonists	Diltiazem
Medication/PH specific drug therapy	Calcium channel antagonists	Felodipine
Medication/PH specific drug therapy	Calcium channel antagonists	Isradipine
Medication/PH specific drug therapy	Calcium channel antagonists	Lercanidipine
Medication/PH specific drug therapy	Calcium channel antagonists	Nifedipine
Medication/PH specific drug therapy	Calcium channel antagonists	Verapamil
Medication/PH specific drug therapy	Endothelin receptor antagonists	Ambrisentan
Medication/PH specific drug therapy	Endothelin receptor antagonists	Bosentan
Medication/PH specific drug therapy	Endothelin receptor antagonists	Macitentan
Medication/PH specific drug therapy	Endothelin receptor antagonists	Sitaxentan
Medication/PH specific drug therapy	PDE5 inhibitors	Sildenafil
Medication/PH specific drug therapy	PDE5 inhibitors	Tadalafil
Medication/PH specific drug therapy	PDE5 inhibitors	Vardenafil
Medication/PH specific drug therapy	Prostacyclin PGI2-containing product	Beraprost
Medication/PH specific drug therapy	Prostacyclin PGI2-containing product	Iloprost
Medication/PH specific drug therapy	Prostacyclin PGI2-containing product	Epoprostenol
Medication/PH specific drug therapy	Prostacyclin PGI2-containing product	Treprostinil
Medication/PH specific drug therapy	Prostacyclin receptor agonists	Selexipag
Medication/PH specific drug therapy	sGC-stimulators	Riociguat
Medication/PH specific drug therapy	Protein-tyrosine kinase inhibitors	Imatinib
Anticoagulation	Start of therapy
Anticoagulation	End of therapy
Anticoagulation	Type of anticoagulant	Phenprocoumon
Anticoagulation	Type of anticoagulant	Warfarin
Anticoagulation	Type of anticoagulant	INR goal (only for Marcumar and Coumadin)
Anticoagulation	Type of anticoagulant	Apixaban
Anticoagulation	Type of anticoagulant	Rivaroxaban
Anticoagulation	Type of anticoagulant	Edoxaban
Anticoagulation	Type of anticoagulant	Dabigatran

Participants

The GoDeep Registry welcomes all PH referral centers worldwide. To participate, please e-mail us: contact@pvri-godeep-registry.org. The participating centers that currently contribute to the GoDeep registry are illustrated in the map and the tables below:

Contributing Members

Recent Publications

Tello, Khodr, et al. "Phosphodiesterase-5 Inhibitor Treatment is Associated with Improved Survival in Pulmonary Hypertension Associated with COPD in the PVRI GoDeep Meta-Registry." Chest.

Yogeswaran, Athiththan, et al. "Comparison of Contemporary Risk Scores in All Groups of Pulmonary Hypertension: A Pulmonary Vascular Research Institute GoDeep Meta-Registry Analysis." Chest (2024).

Majeed, Raphael W., et al. "Pulmonary Vascular Research Institute GoDeep: a meta‐registry merging deep phenotyping datafrom international PH reference centers." Pulmonary Circulation 12.3 (2022): e12123.

Fuenderich, Meike T., et al. "Data Integration for a Global Deep-Phenotyping Registry for Pulmonary Hypertension-Lessons Learned." Studies in health technology and informatics 316 (2024): 334-338.

About us

The PVRI GoDeep team

Kurt Marquardt, Werner Seeger, Patrick Fischer, Achim Michel-Backofen, Henning Gall, Tobiah Antoine, Raphael Majeed (not in the picture: Aileen Müller, Athiththen Yogeswaran, Khodr Tello, Meike Fünderich, Patrick Janetzko, Philipp Krieb)
Medical Team: Werner Seeger, Khodr Tello, Athiththan Yogeswaran, Patrick Janetzko
IT and Data Warehouse Configuration: Raphael Majeed, Kurt Marquardt, Achim Michel-Backofen
Data Documentation: Philipp Krieb, Aileen Müller, Farhan Mubashir
Statistics and Artificial Intelligence Analyses: Meike Fuenderich, Jochen Wilhelm

Giessen Contact Information

E-Mail: contact@pvri-godeep-registry.org
Internet address: https://ilh-giessen.de/en/pvri-godeep/
Telephone +49-641-985-42302

Legal notice

Information in accordance with section 5 TMG.

PVRI GoDeep Registry
Director Prof. Werner Seeger
Institute for Lung Health, Justus Liebig University Giessen
Gaffkystr.9
35392 Giessen
Germany