RHD Beat

Welcome to the second edition of RHD Beat,

It is wonderful to be able to share updates from Ethiopia, Uganda, Australia and Sudan in this edition. We are also thrilled to share plans for a global launch of RHD Action (the global RHD movement) and associated website on September 29 to coincide with World Heart Day.

We look forward to growing our global movement in the months ahead,

 Partners of the RHD Action Alliance

Events & announcements

WHF RHD Side Event at the World Health Assembly

The World Heart Federation (WHF) hosted a side event at the 68th World Health Assembly on 18 May 2015, entitled: ‘Marginalized in their Teens: RHD in Adolescents’. The event was chaired by Sudan’s Minister of Health and moderated by Dr Liesl Zühlke, an RHD specialist at the University of Cape Town. The discussion covered topics at the global, regional and national levels, as contributors shared their experiences and perspectives on RHD from around the world. Speakers included leaders from the African Union, Governments of India and New Zealand, the Ethiopian Ministry of Health, and the leadership of the Medtronic Foundation (a founding Global Partner of the RHD Action Alliance).  The World Heart Federation was especially pleased to gain the support of Dr Matshidiso Moeti, Regional Director of WHO AFRO, who made strong commitments to addressing RHD and CVD in the region by implementing the WHO’s Package of Essential NCD Interventions (WHO PEN): “The inclusion of RHD management in the WHO PEN protocols is a valuable opportunity to integrate this often forgotten NCD into primary health care delivery systems”. The event gained good coverage in the press and you can find relevant content here - bit.ly/1RS48Ky

Please direct any questions about the event to: Joanna.Markbreiter@worldheart.org

Photo credit Twitter/@Bjloring “Side event at #WHA68 on rheumatic heart disease. New Zealand on the panel, with Ethiopia, Sudan, South Africa“

Success in Sudan for RHD Prevention and Control

Dr Sulafa Ali and her team at the Sudan Heart Institute in Khartoum have made great strides in increasing public health resources for RHD in Sudan. The Institute’s hospital-based register had indicated a clustering of RHD cases in the regions of Darfur and Kordufan, which led the team to advocate to the Ministers of Health in these regions for increased resources to prevent and control RHD. They were successful in their goal, as the Ministers agreed to establish one new centre for RHD in each region. 

Stakeholders attend an RHD information session in Sudan

In Darfur, the centre will be built in Niyala, a large, centrally located city which is the home of many RHD cases. Government fundraising is pledged to supply an echocardiography machine, as all physicians joining the centre will be trained in diagnosis of RHD (including via echocardiography) as well as management and prevention. Two paediatricians have already been assigned to the centre; they have since carried out RHD awareness workshops for 37 community health workers in Niyala, and have plans to roll out their awareness programme to other areas of Sudan.

In Kordufan, the centre will be built in Al Obeid, again the largest central town in the region. As an inspiring example of positive South-South collaboration, Miot Hospitals in India have given the resident paediatric cardiologist extensive training in India, as well as donating an echo machine to the facility. In order for the centres to contribute to wider strengthening of the health systems, each will be equipped with a dedicated community health worker and a health promotion officer, so that these centres might benefit the local population beyond the prevention and control of RHD.

RHDAA Visit | Uganda

In June, the Global Partners of the RHD Action Alliance visited Uganda to learn more about the work being undertaken by the Country Partners. The trip involved four intensive days of visits to various project sites, and meetings with key stakeholders. With support from Medtronic Philanthropy, the RHD Action Uganda team has worked for two years in the regions of Lubowa and Gulu to leverage HIV infrastructure for delivery of RHD care to neighboring populations. Members of the RHD Action Alliance met with the cardiologists, primary care physicians, nurses, school teachers, and most importantly, people living with RHD that have been involved in RHD Action Uganda’s work.

In addition to providing care to a large patient registry of over 1200 patients with RHD since 2013, the RHD Action Uganda collaboration has ongoing initiatives to improve adherence to penicillin, management of heart failure symptoms, and access to anticoagulation monitoring. In 2015, the team will embark on two new initiatives to build a school-based primary prevention program and to improve diagnosis of RHD and other cardiovascular diseases using handheld ultrasound in Lira. The June site visit included a visit to Lira hospital to assess the feasibility of this project. This project illustrates an overarching theme of collaboration to build paediatric and adult cardiovascular care infrastructure in regions outside of Kampala. Central to this effort is a program for training Ugandan physicians in Cleveland, USA and on the ground at the Uganda Heart Institute. The team met with some of the cardiologists and paediatricians who have benefitted from this training including Dr. Emmy Okello and Dr. James Kayima (interventional cardiology), Dr. Isaac Ssinabulya (heart failure) and Dr. Grace Mirembe (non-invasive cardiac/vascular imaging).

The RHD Action Uganda team was honoured to host the Global Partners in June and look forward to advancing the RHD agenda locally and globally through advocacy and ongoing engagement with policy makers.

African Union Communiqué on Eradication of RHD in Africa

The Summit of African Union Heads of State and Government (AU Summit) has recently adopted the Addis Ababa Communiqué on Eradication of RHD. The adoption of this communiqué is a significant landmark on the path to tackling RHD in Africa; never before have heads of state come together so firmly to take action on this issue which blights the lives of many of the most marginalized children across the continent. The communiqué recommends several key actions for consideration by African governments. These include: establishing RHD registers; ensuring the supply of benzathine penicillin G; guaranteeing universal access to reproductive health services; strengthening primary healthcare to improve early detection, diagnosis, secondary prevention of RHD and treatment; as well as fostering multi-sectoral and integrated national RHD control programmes.

The communiqué also calls on international stakeholders to provide open-access resources to develop and strengthen country control programmes and to raise the profile of RHD and other NCDs of children and young adults among others. The AU and Pan African Society of Cardiology (PASCAR) – who have been instrumental in the development of the communiqué – have now been mandated to work with other stakeholders and the AU Commissioner to develop a detailed implementation plan of the recommended actions. We look forward to sharing more news with you as this work progresses.

Updates to the diagnostic Jones Criteria for rheumatic fever

Diagnosis of RF is a high stakes decision – incorrect diagnosis may lead to years of unnecessary injections or a missed opportunity to prevent and protect against heart valve damage. In the absence of definitive diagnostic tests, diagnosis of RF is based on a combination of clinical history, examination and investigation results. Diagnostic criteria were first developed in 1994 by the late Dr Duckett Jones. Later known as the Jones Criteria, the global benchmark for RF diagnosis has since been updated by the American Heart Association. Previously revised in 1992 a new Scientific Statement from the American Heart Association was published in Circulation in April 2014.

The Revision of the Jones Criteria for the Diagnosis of Acute Rheumatic Fever in the Era of Doppler Echocardiography - bit.ly/1SJhusW (full text open access) provides definitive advice on the diagnosis of RF in the era of echocardiography. Co-Chair of the Committee on Rheumatic Fever, Endocarditis, and Kawasaki Disease of the Council on Cardiovascular Disease in the Young, Professor Michael Gewitz discusses changes to diagnostic criteria in a video here - bit.ly/1I8QWMW

Commentary is also provided online here - bit.ly/1KwGQLD

Launch of the END RHD CRE

The launch of the END RHD CRE took place at the University of Sydney in May during the week of the RHD Australia Annual Conference, making the most of the opportunity to have the broader Australian RHD community together. A pre-launch slideshow provided some historical context to RHD control and research in Australia and a walk down memory lane with some images and stories from the archives and more recently.

A presentation given by Professor Jonathan Carapetis setting the scene and highlighting key moments in RHD control and research in Australia was a welcome way to mark significant recent achievements of rheumatic heart disease control and to look ahead to the challenges of the future.

END RHD CRE – Investigators and partners meeting | RHD Australia Annual Conference (Sydney)

The aim of the NHMRC-funded Centre of Research Excellence in rheumatic heart disease is to develop targets for rheumatic heart disease control in Australia and a costed, stepwise strategy for achieving them. END RHD CRE Investigators and Partners meetings were held at the University of Sydney in May, complementing meetings arranged by RHD Australia.

Investigators and Partners of the END RHD CRE met formally throughout the week of the conference to set the agenda and determine the priority projects for the first year of the CRE based on three themes: epidemiology and bioscience, implementation and translation, and the RHD community. For an overview, the  END RHD CRE prospectus now available on the RHD Australia website. An all investigators meeting was also conducted, bringing together investigators from other RHD research projects including the AMOSS RHD in Pregnancy study based at the University of Technology in Sydney, the “Improving Secondary Prophylaxis for Rheumatic Heart Disease” study and the “Evaluating the genetic contribution to Rheumatic Heart Disease pathogenesis in Australian Aboriginal and Torres Strait Islander communities” project both based at Menzies School for Health Research in Darwin as well as a number of other researchers engaged in rheumatic fever and rheumatic heart disease.

For further information - END.RHD.CRE.SMB@telethonkids.org.au

Penicillin research invitation

Researchers from the Telethon Kids Institute in Perth are beginning work on a project to analyse the quality of benzathine penicillin G (BPG) samples from around the world. People with access to powdered formulation of BPG are invited to contact Dr Meru Sheel (Meru.Sheel@telethonkids.org.au) to discuss opportunities for collaboration.

Upcoming events

ESC Congress | August 29 - September 2 | London, UK

The world's largest and most influential cardiovascular event contributing to global awareness of the latest clinical trials and breakthrough discoveries. 5 days of scientific sessions. 150 CV Topics. 27 000+ healthcare professionals from 140 countries. 11 000+ abstracts submitted. 500 expert sessions - bit.ly/1IIzYuh

RHD Action Alliance | September 2 - 4 | Global Partners Meeting

The RHD Action Alliance Partners - World Heart Federation, Medtronic Philanthropy and RhEACH - will be meeting in London following the ESC Congress to progress global RHD control activities. This is an opportunity for RHD Action members to meet in person and discuss shared goals. We welcome the opportunity meet colleagues and collaborators in the RHD community also in London for the ESC.

Please email Joanna.markbreiter@worldheart.org to arrange meeting opportunities with the RHD Action Alliance.

RHD Action Launch | September 29 |  New York, United States  

RHD Action - the global movement to control RHD throughout the world - will be launched alongside the United Nations General Assembly in New York in September.

We would like to profile activities planned and underway around the world. This may include posters, videos, photos or other resources of people living with RHD in your setting. Keen to be involved? Please contact us for more information. 

World Heart Day | September 29 | Global

World Heart Day was founded in 2000 to inform people around the globe that heart disease and stroke are the world’s leading causes of death, claiming 17.3 million lives each year.

World Heart Day is an annual event which takes place on 29 September every year. Each year’s celebrations have a different theme, reflecting key issues and topics relating to heart health. This year the theme is creating heart-healthy environments - a particularly important element of RHD control. Suggestions for events and World Heart Day resources accessible here - bit.ly/1eyGHbY

RHD Action Website Launch | September 29 | Online Globally

RhEACH are thrilled to be leading the development of a website for RHD Action which include the work of the RHD Action alliance, RHD Action Countries and profiling and celebrating work underway around the world. The website will serve as a global repository, an amplifying space for the global movement and an opportunity to foster connections old and new.

We have been working closely with RHD Action Partners and our website developers Monkii to develop the concept and the website.

Keen to contribute?

Stories of ongoing country programs: Feel free to send us information about what is going on in your countries so we can populate the website.

Photos: We would like to populate it with high quality images of people and communities living with RHD around the world. If you have any consented or de-identified photos of individuals, team members or RHD control activities we would love to hear from you.  

PASCAR / CVS(M) Conference | October 3 - 7 | Balaclava Fort, Mauritius

The Pan African Society of Cardiology (PASCAR) in association with the Cardiovascular Society of Mauritius are calling for abstracts for the 5th All Africa Conference on Heart Disease, Diabetes and Stroke. This joint conference will be held in Balaclava Fort, Mauritius from 03 – 07 October 2015. This multidisciplinary meeting on heart disease, stroke and diabetes will be addressing challenges in Africa in respect of these conditions. More information is available here - bit.ly/1MwY4Jd

Please register your interest in an RHD side meeting here.

RHD in the News

RHD Week in South Africa

4 - 10 August is Rheumatic Heart Disease week in South Africa, focusing on increased awareness, increased screening and better management - bit.ly/1MQzjqC

RHD becomes notifiable in Western Australia

Rheumatic fever has been notifiable in Western Australia since 2010. In June 2015 rheumatic heart disease also became legally notifiable.

Further information is available as follows: 

Telethon Kids Institute - bit.ly/1LW9tCg

RHD Australia - bit.ly/1DNBpQJ

New BMJ podcast on the diagnosis and management of RF

Presented by Dr Rachel Webb - bit.ly/1IZ9Yt9

New factsheet on the link between skin sores and RF

Can skin sores cause rheumatic fever? - bit.ly/1HLi1F6

Want even more RF and RHD updates? @RhEACHout is an active twitter feed with updates on events, publications and opportunities for RHD control. For information about wider CVD concerns, follow @worldheartfed for daily updates.

Research Roundup

Click through to an overview of peer reviewed RHD research papers published since the first edition of RHD Beat - bit.ly/1DrXfi9