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CARDIOVASCULAR JOURNAL OF AFRICA • Volume 29, No 2, March/April 2018
98
AFRICA
Participation in research improves overall patient
management: insights from the Global Rheumatic Heart
Disease registry (REMEDY)
EA Prendergast, S Perkins, ME Engel, B Cupido, V Francis, A Joachim, M Al Kebsi, F Bode-Thomas,
A Damasceno, A Abul Fadl, A El Sayed, B Gitura, N Kennedy, A Ibrahim, J Mucumbitsi, AM Adeoye,
J Musuku, E Okello, T Olunuga, S Sheta, BM Mayosi, LJ Zühlke, for the REMEDY investigators
Abstract
Background:
Rheumatic heart disease (RHD) is a major
public health problem in low- and middle-income countries
(LMICs), with a paucity of high-quality trial data to improve
patient outcomes. Investigators felt that involvement in a
recent large, observational RHD study impacted positively on
their practice, but this was poorly defined.
Aim:
The purpose of this study was to document the expe-
rience of investigators and research team members from
LMICs who participated in a prospective, multi-centre study,
the global Rheumatic Heart Disease Registry (REMEDY),
conducted in 25 centres in 14 countries from 2010 to 2012.
Methods:
We conducted an online survey of site personnel
to identify and quantify their experiences. Telephone inter-
views were conducted with a subset of respondents to gather
additional qualitative data. We asked about their experi-
ences, positive and negative, and about any changes in RHD
management practices resulting from their participation in
REMEDY as a registry site.
Results:
The majority of respondents in both the survey
and telephone interviews indicated that participation as a
registry site improved their management of RHD patients.
Administrative changes included increased attention to
follow-up appointments and details in patient records. Clinical
changes included increased use of penicillin prophylaxis, and
Department of Paediatrics and Child Health, Red Cross
War Memorial Children’s Hospital, Faculty of Health
Sciences, University of Cape Town, Cape Town, South
Africa
EA Prendergast, BA
S Perkins, MS
A Joachim, RN
LJ Zühlke, MB ChB, FCPaeds, Cert Card, MPH, FESC, FACC, PhD,
Liesl.zuhlke@uct.ac.zaDepartment of Medicine, Groote Schuur Hospital, Faculty
of Health Sciences, University of Cape Town, Cape Town,
South Africa
ME Engel, BSc (Med) Hons, MPH, PhD
V Francis, BA (Nursing)
B Mayosi, MB ChB, FESC, DPhil
LJ Zühlke, MB ChB, FCPaeds, Cert Card, MPH, FESC, FACC, PhD
Division of Cardiology, Groote Schuur Hospital, Faculty
of Health Sciences, University of Cape Town, Cape Town,
South Africa
B Cupido, MB ChB, Cert Card, MPhil
B Mayosi, MB ChB, FESC, DPhil
LJ Zühlke, MB ChB, FCPaeds, Cert Card, MPH, FESC, FACC, PhD
Faculty of Medicine and Surgery, University of Sana’a,
Al-Thawrah, Cardiac Centre, Sana’a, Yemen
M Al Kebsi, MD, PhD
Departments of Paediatrics, University of Jos and Jos
University Teaching Hospital, Jos, Nigeria
F Bode-Thomas, MD
Department of Medicine, Eduardo Mondlane University,
Maputo, Mozambique
A Damasceno, MD, PhD
Faculty of Medicine, Benha University, Cairo, Egypt
A Abul Fadl, MD
Cardiothoracic Surgery Department, Al Shaab Teaching
Hospital and Faculty of Medicine, Alzaiem Alazhari
University, Khartoum, Sudan
A El Sayed, MD
A Ibrahim, MD, MSc (Echo), Dip Cardiol (London)
Cardiology Unit, Department of Medicine, Kenyatta
National Teaching and Referral Hospital, Nairobi, Kenya
B Gitura, MD
Department of Paediatrics and Child Health, College of
Medicine, University of Malawi, Blantyre, Malawi; Centre
for Medical Education, Queen’s University, Belfast; Royal
Belfast Hospital for Sick Children, Belfast, Ireland
N Kennedy, MB ChB, MMed Sci
Paediatric Cardiology Unit, Department of Paediatrics,
King Faisal Hospital, Kigali, Rwanda
J Mucumbitsi, MD
Division of Cardiology, Department of Medicine, University
College Hospital, Ibadan, Nigeria
AM Adeoye, MD
University Teaching Hospital, Department of Paediatrics
and Child Health, University of Zambia, Lusaka, Zambia
J Musuku, MD
Uganda Heart Institute, Kampala, Uganda
E Okello, MD, PhD
Department of Medicine, Federal Medical Centre,
Abeokuta, Nigeria
T Olunuga, MD
Department of Paediatrics, Division of Paediatric Cardiology,
Faculty of Medicine, Cairo University Children’s Hospital,
Cairo, Egypt
S Sheta, MD, PhD
Dean of Faculty of Health Sciences, University of Cape
Town, South Africa
BM Mayosi, MB ChB, FESC, DPhil