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Registries for single diseases – the PAPUCO registry for pulmonary hypertension in Africa Friedrich Thienemann.

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Presentation on theme: "Registries for single diseases – the PAPUCO registry for pulmonary hypertension in Africa Friedrich Thienemann."— Presentation transcript:

1 Registries for single diseases – the PAPUCO registry for pulmonary hypertension in Africa
Friedrich Thienemann

2 Lancet 2012; 380: 2095–128

3 Lancet 2012; 380: 2095–128

4 A clinical registry captured data from 5328 de novo presentations of heart disease at the Cardiology Unit of Chris Hani Baragwanath Hospital in Soweto South Africa from

5 Pulm. arter. hypertension Left heart disease Chronic lung disease
A clinical registry captured data from 5328 de novo presentations of heart disease at the Cardiology Unit of Chris Hani Baragwanath Hospital in Soweto South Africa from Idiopathic HIV Connective tissue Congenital Pulm. arter. hypertension Left heart disease Chronic lung disease Rheumatic heart disease 5328 HD > 2505 HF > 697 RHF

6 A clinical registry captured data from 5328 de novo presentations of heart disease at the Cardiology Unit of Chris Hani Baragwanath Hospital in Soweto South Africa from

7 5328 de novo presentations of heart disease
in South Africa (9.7% HIV-positive) Primary diagnosis of heart disease of all HIV-positive cases (n= 518) Sliwa at al. EHJ. 2012

8 Prognosis of PH (untreated)
Survival at NYHA-class III 2.8 years (median) 100 80 60 Survival (%) 40 20 0,5 1 1,5 2 2,5 3 3,5 4 4,5 5 years D’Alonzo GE et al; Ann Intern Med 1991;115:

9 Prognosis of PH (untreated)
Survival at NYHA-class III 2.8 years (median) 100 80 Results from a national prospective registry 60 Survival (%) 40 20 0,5 1 1,5 2 2,5 3 3,5 4 4,5 5 years D’Alonzo GE et al; Ann Intern Med 1991;115:

10 TTE, if RVSP >35 mmHg: RHC
Galie N et al. EHJ 2009

11 PH in Africa Diagnoses Final diagnosis
1=Pulmonary Arterial Hypertension 2=Pulmonary Veno Occlusive Disease and/or Pulmonary Capillary Haemangiomatosis 3=Pulmonary Hypertension due to Left Heart Disease 4=Pulmonary Hypertension due to Lung Disease and/or Hypoxia 5=Chronic Thromboembolic Pulmonary Hypertension 6=Pulmonary Hypertension with Unclear/Multifactorial Mechanisms Aetiology of Pulmonary Arterial Hypertension (1) 1=Idiopathic PAH 2=Heritable (BMPR2, ALK-1, endoglin, unknown) 3=Drugs and toxins induced 4=Associated with Connective Tissue Disease (scleroderma) 5=Associated with Connective Tissue Disease (not scleroderma) 6=Associated with HIV infection 7=Associated with Portal Hypertension 8=Associated with Congenital Heart Disease 9=Associated with Schistosomiasis 10=Associated with Chronic Haemolytic Anaemia 11=Persistent pulmonary hypertension of new born Aetiology of Pulmonary hypertension related to left heart disease (3) 1=Left Ventricular Systolic Dysfunction 2=Left Ventricular Diastolic Dysfunction 3=Valvular disease Aetiology of Pulmonary hypertension related to lung disease/hypoxia (4) 1=Chronic obstructive pulmonary disease 2=Interstitial lung disease 3=Other pulmonary diseases with mixed restrictive and obstructive pattern 4=Sleep-disordered breathing 5=Alveolar hypoventilation disorders 6=Chronic exposure to high altitude 7=Developmental abnormalities Aetiology of pulmonary hypertension due to unclear mechanisms (6) 1=Haematological disorders - Myeloproliferative disorders 2=Haematological disorders - Splenectomy 3=Systemic disorders - Sarcoidosis 4=Systemic disorders - Pulmonary Langerhans cell histiocytosis 5=Systemic disorders - Lymphangioleiomyomatosis 6=Systemic disorders - Neurofibromatosis 7=Systemic disorders - Vasculitis 8=Metabolic disorders - Glycogen storage disease 9=Metabolic disorders - Gaucher’s disease 10=Metabolic disorders - Thyroid disorders 11=Other - Tumour obstruction 12=Other - Fibrosing mediastinitis 13=Other - Chronic renal failure on dialysis PH in Africa Diagnoses

12 PH in Africa HIV PH COPD PH Sickle-cell PH DLD-PCP PH DLD-TB PH
PH in Africa HIV PH COPD PH Sickle-cell PH DLD-PCP PH DLD-TB PH Schisto PH 12

13 PAPUCO Prof. Karen Sliwa Dr. Friedrich Thienemann
Pan African Pulmonary hypertension Cohort study Prof. Karen Sliwa Hatter Institute for Cardiovascular Research in Africa University of Cape Town Dr. Friedrich Thienemann Institute of Infectious Diseases and Molecular Medicine University of Cape Town

14 PAPUCO - Pan African Pulmonary hypertension Cohort study
PAPUCO - Pan African Pulmonary hypertension Cohort study Objectives: PAPUCO was established in 2010 to describe the epidemiology and characteristics of pulmonary hypertension in Sub-Saharan Africa. Study Design: a prospective observational study. Population: 500 patients with pulmonary hypertension who reside in Sub-Saharan Africa will be enrolled in the cohort within the first year. Inclusion: patients with newly diagnosed pulmonary hypertension based on clinical and echocardiographical findings. Follow-up: 6 months Serum/plasma will be collected in selected centres Project leaders: Prof. Karen Sliwa, SA Dr. Friedrich Thienemann, SA The collaboration currently includes 21 cardiovascular specialist centres in Africa. 14

15 PAPUCO site GF Jooste Hospital
PAPUCO site GF Jooste Hospital Population of 1.3 million High-density, low-income communities Incidence of TB >1000 cases per 100,000 of the population per annum Antenatal HIV prevalence can be 30% 11 primary-level ART clinics in the referral area 15

16 PAPUCO web-based eCohort www.papuco.org mobile internet enabled
PAPUCO web-based eCohort mobile internet enabled collect, store, share, report multimedia files (CXR, ECHO) Online resource centre: guidelines, protocols, scientific papers, ICF, info sheet, patient education sheet, CRFs Online FAQ Online video tutorials Intuitive design Data encryption / back-ups 5. Dimentional diagnostics: xray, ct, mrt, us, echo, ekg, video, etc… 6. Real time online results 7. Training 8. security 16

17 PAPUCO Baseline Follow-up Diagnosis
Clinical presentation and investigation PAPUCO quantitative tests for pulmonary hypertension at baseline and 6-months follow-up Symptom score 1 to 8 (SOB, cough, fatigue, dizziness, syncope or near syncope, bluish lips and/or skin, palpitation, chest pain) NYHA classification Karnofsky performance score Pulse / BP at rest Respiration rate at rest SPO2 at rest Arterial blood gas (limited) 6 Minute walk test Laboratory investigation (FBC, LFT, Creat, TSH, HIV, CD4, NT Pro BNP, ESR, CRP) Microbiology (TB, schistosomiasis) Haematology (haemolytic anaemia) Echo Diagnosis of PAH ECHO (possible PAH) RIGHT HEART CATH (confirmed PAH)

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30 F.O.S.S in action - PAPUCO Ubuntu GNU/Linux Drupal US Government FBI
MTV e-bay 2% of internet Google GVS MySQL / PHP SSL encryption all rights reserved. copyright integerafrica ©

31 PAPUCO - timelines Kick-off meeting at PVRI conference in Cape Town, June 2010 Recruitment of Cardiovascular Centres across Africa Seed funding Bayer Healthcare & PVRI Provision of database & IT support through integerafrica Launch/training at PASCAR, Kampala, May 2011 Formation of sub-groups (ECHO, paediatrics, HIV, COPD,…) Skype conferences General inquiries Assistance with ethics application Trouble shooting with database Clinical questions Ethics approval from 8 centers Meeting SA Heart October 2011 Meeting PVRI Cape Town February 2012 Meeting at WCC April 2012 Data presentation & Publication Planning of interventional study 31

32 Anastase Dzudie Friedrich Thienemann Patience Udo Dike Ojji Kamilu M. Karaye Karen Sliwa Rossy Matshela Muhammad Mijinyawa Mahmoud U. Sani Dr. Hakim Kemi Tibazarwa Ana Mocumbi Solomon S. Danbauchi Amam C. Mbakwem Elijaa Ogola Okechukwu Ogah Lori Blauwet

33 Research & Development Thank you! 33

34 PAPUCO recruitment Jun 2011 - Nov 2012
PAPUCO recruitment Jun Nov 2012 9/21 cardiovascular researchers received ethics approval, N=88 patients 9 of 34

35 PAPUCO demographics 35

36 PAPUCO cardiovascular risk factors
PAPUCO cardiovascular risk factors 36

37 Clinical characteristics at baseline

38 Clinical classification
Clinical classification 38

39 Heart failure therapy at baseline
Heart failure therapy at baseline 39

40 Current studies Pan African Pulmonary hypertension Cohort study (PAPUCO) Pulmonary hypertension in HIV Survival Prognostic markers Markers of inflammation Motivate for disease-targeted therapy Establish an animal model for PH at UCT Heart disease in HIV incidence and prevalence survey Research & Development 40

41 Research & Development Thank you! 41

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