PROF A.A. OROGADE MBBS, FWACP,

Transcription

1 PROPOSAL ON NATIONAL REGISTRY FOR INFECTIVE ENDOCARDITIS IN CHILDREN (PIER) PROF A.A. OROGADE MBBS, FWACP, MSc (Lond), DLSHTM

2 AHMADU BELLO UNIVERSITY ZARIA PROF A.A. OROGADE 2

3 Outline INFECTIVE ENDOCARDITIS RESEARCH IN NIGERIAN CHILDREN Purpose of the National Registry Protocol of the Infective endocarditis National Registry Planning the Infective endocarditis National Registry

4 Infective Endocarditis in Nigerian children 32 children over 8 years ( ) Retrospective study. Clinical diagnosis: Fever, changing heart murmur in existing cardiac disease Bacterial isolation in 58% No echocardiographic findings

5 Infective Endocarditis in Nigerian children 30 children seen over 7 years ( ) Retrospective study Non specific features in existing cardiac disease Bacterial isolation 36.7% Echocardiography showed vegetations in 40%

6 Other studies

7 Summary of studies. Relatively few specific papers, difficult to compare Mainly epidemiology Protocols for management not researched Quality of care and outcome unknown No country specific guidelines exist

8 Unequally distributed resources for the prongs of diagnosis

9 Outline Infective Endocarditis Research in Nigerian Children PURPOSE OF THE NATIONAL REGISTRY Protocol of the Infective endocarditis National Registry Planning the Infective endocarditis National Registry

10 Purpose of the National Registry Purposefully planned records aimed at improving health outcomes of particular patients in particular settings. Prospective versus retrospective study They analyzed 13 registries in Australia, Geographical Denmark, spread Sweden, of data and the regional UK, and peculiarities the USA. Consistency Sweden of methodology was the quickest to adopt disease registries and had almost 90 that were Focus on government Intervention points supported not just descriptive research. Multicentred Study versus a Registry

11 Purpose.contd Fill gaps in Epidemiology, Assist in articulating new research Formulate or modify local management guidelines, Improve patient management Document effectiveness of therapies. Generate insight into risk factors for adverse outcomes

12 .contd Evaluate and plan healthcare services Define quality of care and best practices Platform for local interventions to improve health outcomes. Provide comparative benchmarks reports to stakeholders: patients, hospital clinical staff, health administrators

13 Outline Infective Endocarditis Research in Nigerian Children Purpose of the National Registry PROTOCOL OF THE INFECTIVE ENDOCARDITIS NATIONAL REGISTRY Planning the Infective endocarditis National Registry

14 Infective Endocarditis National Registry Objectives Define the Epidemiology of IE in Nigerian children (risk factors : who, what, where and when) Document what treatment protocols Complications encountered and outcome Develop robust database to enable formulate country specific guidelines, monitor trends and evaluate management.

15 Infective Endocarditis National Registry Study Population All children aged 1-12 years attending participating facilities Satisfying and classified as Modified Duke s criteria (Definite and Possible) using clinical, imaging and microbiologic techniques

16 Infective Endocarditis National Registry Design and Data Collection Ethical issues Essentials of data needed by pilot study Web based entry (Prospective, Longitudinal) Timelines for study Monitoring

17 Outline Infective Endocarditis Research in Nigerian Children Purpose of the National Registry Protocol of the Infective endocarditis National Registry PLANNING THE INFECTIVE ENDOCARDITIS NATIONAL REGISTRY

18 Project plan for Infective Endocarditis National Registry Key stakeholders including sponsors Feasibility, Minimum requirements The Registry Coordinating Team/Administration for oversight Definition of data set, target population, management protocols, outcomes

19 Project plan for the National Registry Form a local Endocarditis team : clinicians, microbiologist, imaging, surgeons, patient support groups, records, manager Collect relevant data regularly (Flow chart) Input data Transmit centrally to the core team Review of data: annually, biannually etc

20 The Proposal Development of a robust database based on defined objectives using equipped centres with a coordinated approach. This database would form the basis of formulation of country specific guidelines for management, monitoring and evaluation of Infective Endocarditis in Nigerian Children

21 LET S PUT IN CHECK BY PIER