Chronic thromboembolic pulmonary hypertension (CTEPH) is characterized by the persistence of thromboemboli in the form of organized tissue obstructing the pulmonary arteries. The consequence is an inc...
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding CTEPH can be frustrating. This condition affects a relatively small population, which restricts the scope of systematic clinical studies. Additionally, the absence of identified genetic factors and the unclear inheritance pattern complicate the understanding of CTEPH, making it challenging to gather comprehensive clinical data.
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Currently, there is one FDA-approved treatment for CTEPH: riociguat. Furthermore, there are 29 active clinical trials investigating various aspects of CTEPH, which may offer hope for new therapeutic options. For more information on these trials, you can visit ClinicalTrials.gov and search for chronic thromboembolic pulmonary hypertension.
Actionable guidance for navigating care for chronic thromboembolic pulmonary hypertension
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding CTEPH can be frustrating. This condition affects a relatively small population, which restricts the scope of systematic clinical studies. Additionally, the absence of identified genetic factors and the unclear inheritance pattern complicate the understanding of CTEPH, making it challenging to gather comprehensive clinical data.
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Currently, there is one FDA-approved treatment for CTEPH: riociguat. Furthermore, there are 29 active clinical trials investigating various aspects of CTEPH, which may offer hope for new therapeutic options. For more information on these trials, you can visit ClinicalTrials.gov and search for chronic thromboembolic pulmonary hypertension.
Actionable guidance for navigating care for chronic thromboembolic pulmonary hypertension
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding CTEPH can be frustrating. This condition affects a relatively small population, which restricts the scope of systematic clinical studies. Additionally, the absence of identified genetic factors and the unclear inheritance pattern complicate the understanding of CTEPH, making it challenging to gather comprehensive clinical data.
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Currently, there is one FDA-approved treatment for CTEPH: riociguat. Furthermore, there are 29 active clinical trials investigating various aspects of CTEPH, which may offer hope for new therapeutic options. For more information on these trials, you can visit ClinicalTrials.gov and search for chronic thromboembolic pulmonary hypertension.
Actionable guidance for navigating care for chronic thromboembolic pulmonary hypertension
To navigate your care for CTEPH, consider seeking a pulmonologist with expertise in pulmonary hypertension. They can provide specialized care and management strategies. Additionally, you may want to explore clinical trial participation, which could provide access to cutting-edge treatments. Resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. While there are currently no identified patient organizations, staying connected with clinical trial updates can be beneficial.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 6 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.