Registry for Pulmonary Hypertension in China

NCT01417338 | Unknown DMC

• 1 other identifier: CIFuwaiHospital
• Study Type: observational
• Target: 3,079
• Locations: 1 country
• Sites: 1

Brief Summary

1. 1.To characterize the demographics and clinical course of the patient population diagnosed as having WHO group I pulmonary arterial hypertension and WHO group IV pulmonary hypertension due to chronic thromboembolic pulmonary hypertension
2. 2.To describe real-world outcome of Chinese patients with WHO group I pulmonary arterial hypertension and WHO group IV pulmonary hypertension due to chronic thromboembolic pulmonary hypertension
3. 3.To evaluate differences in patient outcomes according to classification subgroup
4. 4.To identify clinical predictors of long-term survival
5. 5.To assess the relationship between targeted therapies for pulmonary arterial hypertension and patient outcomes

Conditions

Pulmonary Arterial Hypertension; Chronic Thromboembolic Pulmonary Hypertension; Death

Keywords

Hypertension,pulmonary; Mortality; Risk factors

Outcome Measures

Primary Outcomes (1)

• Survival

  The time from diagnosis to the date of occurrence of death, or need to perform atrial Septostomy and lung transplantation, or to the deadline of the study. The average follow-up period is 5 years.

  5 years

Study Arms (1)

Pulmonary hypertension group

Patients who were firstly diagnosed as pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Consecutive patients who were firstly diagnosed as pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension at 53 participating institutions in China

You may qualify if:

• Signed patients'consent
• Diagnosed by right heart catheterization one month within study enrollment
• patients who were firstly diagnosed as pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

Sponsors & Collaborators

• Chinese Academy of Medical Sciences, Fuwai Hospital: lead

Study Sites (1)

Fu Wai Hospital

Beijing, 100037, China

RECRUITING

Related Publications (21)

• Badesch DB, Raskob GE, Elliott CG, Krichman AM, Farber HW, Frost AE, Barst RJ, Benza RL, Liou TG, Turner M, Giles S, Feldkircher K, Miller DP, McGoon MD. Pulmonary arterial hypertension: baseline characteristics from the REVEAL Registry. Chest. 2010 Feb;137(2):376-87. doi: 10.1378/chest.09-1140. Epub 2009 Oct 16.

  PMID: 19837821 BACKGROUND

• Benza RL, Miller DP, Gomberg-Maitland M, Frantz RP, Foreman AJ, Coffey CS, Frost A, Barst RJ, Badesch DB, Elliott CG, Liou TG, McGoon MD. Predicting survival in pulmonary arterial hypertension: insights from the Registry to Evaluate Early and Long-Term Pulmonary Arterial Hypertension Disease Management (REVEAL). Circulation. 2010 Jul 13;122(2):164-72. doi: 10.1161/CIRCULATIONAHA.109.898122. Epub 2010 Jun 28.

  PMID: 20585012 BACKGROUND

• D'Alonzo GE, Barst RJ, Ayres SM, Bergofsky EH, Brundage BH, Detre KM, Fishman AP, Goldring RM, Groves BM, Kernis JT, et al. Survival in patients with primary pulmonary hypertension. Results from a national prospective registry. Ann Intern Med. 1991 Sep 1;115(5):343-9. doi: 10.7326/0003-4819-115-5-343.

  PMID: 1863023 BACKGROUND

• Duffels MG, Engelfriet PM, Berger RM, van Loon RL, Hoendermis E, Vriend JW, van der Velde ET, Bresser P, Mulder BJ. Pulmonary arterial hypertension in congenital heart disease: an epidemiologic perspective from a Dutch registry. Int J Cardiol. 2007 Aug 21;120(2):198-204. doi: 10.1016/j.ijcard.2006.09.017. Epub 2006 Dec 19.

  PMID: 17182132 BACKGROUND

• Fasnacht MS, Tolsa JF, Beghetti M; Swiss Society for Pulmonary Arterial Hypertension. The Swiss registry for pulmonary arterial hypertension: the paediatric experience. Swiss Med Wkly. 2007 Sep 8;137(35-36):510-3. doi: 10.4414/smw.2007.11895.

  PMID: 17990138 BACKGROUND

• Fischler M, Speich R, Dorschner L, Nicod L, Domenighetti G, Tamm M, Rochat T, Aubert JD, Ulrich S; Swiss Society for Pulmonary Hypertension. Pulmonary hypertension in Switzerland: treatment and clinical course. Swiss Med Wkly. 2008 Jun 28;138(25-26):371-8. doi: 10.4414/smw.2008.11914.

  PMID: 18587689 BACKGROUND

• Humbert M, Sitbon O, Chaouat A, Bertocchi M, Habib G, Gressin V, Yaici A, Weitzenblum E, Cordier JF, Chabot F, Dromer C, Pison C, Reynaud-Gaubert M, Haloun A, Laurent M, Hachulla E, Simonneau G. Pulmonary arterial hypertension in France: results from a national registry. Am J Respir Crit Care Med. 2006 May 1;173(9):1023-30. doi: 10.1164/rccm.200510-1668OC. Epub 2006 Feb 2.

  PMID: 16456139 BACKGROUND

• Jing ZC, Xu XQ, Han ZY, Wu Y, Deng KW, Wang H, Wang ZW, Cheng XS, Xu B, Hu SS, Hui RT, Yang YJ. Registry and survival study in chinese patients with idiopathic and familial pulmonary arterial hypertension. Chest. 2007 Aug;132(2):373-9. doi: 10.1378/chest.06-2913. Epub 2007 Mar 30.

  PMID: 17400671 BACKGROUND

• McGoon MD, Krichman A, Farber HW, Barst RJ, Raskob GE, Liou TG, Miller DP, Feldkircher K, Giles S. Design of the REVEAL registry for US patients with pulmonary arterial hypertension. Mayo Clin Proc. 2008 Aug;83(8):923-31. doi: 10.4065/83.8.923.

  PMID: 18674477 BACKGROUND

• Mukerjee D, St George D, Coleiro B, Knight C, Denton CP, Davar J, Black CM, Coghlan JG. Prevalence and outcome in systemic sclerosis associated pulmonary arterial hypertension: application of a registry approach. Ann Rheum Dis. 2003 Nov;62(11):1088-93. doi: 10.1136/ard.62.11.1088.

  PMID: 14583573 BACKGROUND

• Rich S, Dantzker DR, Ayres SM, Bergofsky EH, Brundage BH, Detre KM, Fishman AP, Goldring RM, Groves BM, Koerner SK, et al. Primary pulmonary hypertension. A national prospective study. Ann Intern Med. 1987 Aug;107(2):216-23. doi: 10.7326/0003-4819-107-2-216.

  PMID: 3605900 BACKGROUND

• Rich S, Rubin L, Walker AM, Schneeweiss S, Abenhaim L. Anorexigens and pulmonary hypertension in the United States: results from the surveillance of North American pulmonary hypertension. Chest. 2000 Mar;117(3):870-4. doi: 10.1378/chest.117.3.870.

  PMID: 10713017 BACKGROUND

• Thenappan T, Shah SJ, Rich S, Gomberg-Maitland M. A USA-based registry for pulmonary arterial hypertension: 1982-2006. Eur Respir J. 2007 Dec;30(6):1103-10. doi: 10.1183/09031936.00042107. Epub 2007 Sep 5.

  PMID: 17804449 BACKGROUND

• Tueller C, Stricker H, Soccal P, Tamm M, Aubert JD, Maggiorini M, Zwahlen M, Nicod L; Swiss Society for Pulmonary Hypertension. Epidemiology of pulmonary hypertension: new data from the Swiss registry. Swiss Med Wkly. 2008 Jun 28;138(25-26):379-84. doi: 10.4414/smw.2008.11915.

  PMID: 18587690 BACKGROUND

• Humbert M, Sitbon O, Chaouat A, Bertocchi M, Habib G, Gressin V, Yaici A, Weitzenblum E, Cordier JF, Chabot F, Dromer C, Pison C, Reynaud-Gaubert M, Haloun A, Laurent M, Hachulla E, Cottin V, Degano B, Jais X, Montani D, Souza R, Simonneau G. Survival in patients with idiopathic, familial, and anorexigen-associated pulmonary arterial hypertension in the modern management era. Circulation. 2010 Jul 13;122(2):156-63. doi: 10.1161/CIRCULATIONAHA.109.911818. Epub 2010 Jun 28.

  PMID: 20585011 BACKGROUND

• Zhang R, Dai LZ, Xie WP, Yu ZX, Wu BX, Pan L, Yuan P, Jiang X, He J, Humbert M, Jing ZC. Survival of Chinese patients with pulmonary arterial hypertension in the modern treatment era. Chest. 2011 Aug;140(2):301-309. doi: 10.1378/chest.10-2327. Epub 2011 Feb 17.

  PMID: 21330386 BACKGROUND

• Li Q, Yu H, Xiong C, Gu Q, Yu Z, Liu Y, Wu W, Zhu X, Han H, He J. Pulmonary arterial compliance as a long-term prognostic indicator in pulmonary arterial hypertension associated with adult congenital heart disease: results from a National multicenter prospective registry. BMC Cardiovasc Disord. 2025 Oct 14;25(1):739. doi: 10.1186/s12872-025-05230-5.

  PMID: 41087973 DERIVED

• Li W, Zhang XC, Qian Y, Yu HR, Quan RL, Yang T, Gu Q, Xiong CM, He JG. Prognostic Value of Cardiac MRI-derived Left Ventricular Layer-specific Strain in Pulmonary Arterial Hypertension. Radiol Cardiothorac Imaging. 2025 Aug;7(4):e240334. doi: 10.1148/ryct.240334.

  PMID: 40673768 DERIVED

• Qian Y, Quan R, Chen X, Gu Q, Xiong C, Han H, Zhang G, Chen Y, Yu Z, Tian H, Liu Y, Zhu X, Li S, Zhang C, He J. Characteristics, Long-term Survival, and Risk Assessment of Pediatric Pulmonary Arterial Hypertension in China: Insights From a National Multicenter Prospective Registry. Chest. 2023 Jun;163(6):1531-1542. doi: 10.1016/j.chest.2022.11.038. Epub 2022 Dec 5.

  PMID: 36470418 DERIVED

• Quan R, Yang Y, Yang Z, Tian H, Li S, Shen J, Ji Y, Zhang G, Zhang C, Wang G, Liu Y, Cheng Z, Yu Z, Song Z, Zheng Z, Cui W, Chen Y, Liu S, Chen X, Qian Y, Xiong C, Shan G, He J. Risk prediction in medically treated chronic thromboembolic pulmonary hypertension. BMC Pulm Med. 2021 Apr 20;21(1):128. doi: 10.1186/s12890-021-01495-6.

  PMID: 33879094 DERIVED

• Deng L, Quan R, Yang Y, Yang Z, Tian H, Li S, Shen J, Ji Y, Zhang G, Zhang C, Wang G, Liu Y, Cheng Z, Yu Z, Song Z, Zheng Z, Cui W, Chen Y, Liu S, Xiong C, Shan G, He J. Characteristics and long-term survival of patients with chronic thromboembolic pulmonary hypertension in China. Respirology. 2021 Feb;26(2):196-203. doi: 10.1111/resp.13947. Epub 2020 Sep 20.

  PMID: 32954622 DERIVED

MeSH Terms

Conditions

Pulmonary Arterial Hypertension; Death; Hypertension, Pulmonary

Condition Hierarchy (Ancestors)

Lung Diseases; Respiratory Tract Diseases; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Hypertension; Vascular Diseases; Cardiovascular Diseases

Study Officials

• Jian-Guo He, M.D.

  Fu Wai Hospital

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Jian-Guo He, M.D.

CONTACT

86-10-88398060; hejianguofw@gmail.com

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Director of Pulmonary vascular disease center

Study Record Dates

• First Submitted: June 28, 2011
• First Posted: August 16, 2011
• Study Start: August 1, 2009
• Primary Completion: December 1, 2019
• Study Completion: December 1, 2020
• Last Updated: June 9, 2017

Record last verified: 2017-06

Locations

CN (1)