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Prospects for the future: supporting the elimination of rheumatic heart disease – a National Heart, Lung, and Blood Institute Workshop Proceedings
  1. Mary Y Masterson1,
  2. Andrea Z Beaton2,3,
  3. Makeda J Williams1,
  4. Kathleen N Fenton1,
  5. Geetha P Bansal4,
  6. Ana O Mocumbi5,6,
  7. Jonathan R Carapetis7,8,
  8. David C Goff Jr1,
  9. George A Mensah1
  1. 1 National Heart Lung and Blood Institute, Bethesda, Maryland, USA
  2. 2 Cardiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
  3. 3 Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
  4. 4 John E Fogarty International Center, Bethesda, Maryland, USA
  5. 5 Non Communicable Diseases, Instituto Nacional de Saúde, Maputo, Mozambique
  6. 6 Universidade Eduardo Mondlane, Maputo, Mozambique
  7. 7 Department of Infectious Diseases, Perth Children's Hospital, Nedlands, Western Australia, Australia
  8. 8 Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, Nedlands, Western Australia, Australia
  1. Correspondence to Dr Mary Y Masterson; mary.masterson{at}

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Rheumatic heart disease (RHD) is one of the most neglected yet preventable chronic cardiac diseases, with low-income and middle-income countries (LMICs) carrying the heaviest burden.1–3 RHD develops in multiple stages—from the initial superficial group A streptococcal (GAS) infection to the development of acute rheumatic fever (ARF), and the resulting permanent damage to the heart valves, that is RHD.1 High-income countries (HICs) have made significant strides in reducing RHD prevalence and mortality through improved living conditions and access to appropriate primary, secondary and tertiary care.4 However, gains in high-income settings have not translated to reduced RHD prevalence and mortality in low-income settings. Innovative strategies, fit for purpose that also build in-country research capacity, are needed to support the sustained reduction/elimination of RHD in LMICs and low-resource settings within HICs, using equitable research partnerships.

During the early 20th century, extensive progress was made, from identifying the GAS pathogen to developing efficacious therapeutics such as penicillin. From the 1960s to the early 2000s, interest in and advocacy for research waned and progress stalled. Since then, there have been more calls5–11 for attention to this neglected field focused on concerted efforts that promote the eventual elimination of this preventable disease. Global RHD control is eminently achievable in the next 50 years, but high-quality research across the translational spectrum is critical to achieving this goal.

In June 2021, the National Heart, Lung, and Blood Institute supported a workshop covering multiple domains (basic science, clinical research, global health and implementation science) to ascertain actionable steps the research community could take in support of the elimination of RHD. This workshop resulted in the convening of primordial, primary, secondary and tertiary care working groups (WGs) that met over a 3-month period to assess the state of the field and present their findings during the ‘Eradication of Rheumatic Heart Disease: Assessing Research Challenges and Opportunities Workshop Series’ held in November 2021.12

The multidisciplinary approach deployed during the workshop (figure 1) highlighted actionable gaps that could be addressed by the research community to support the eventual elimination of RHD in our lifetime. During the workshop, each WG presented their findings that are described in further detail within this supplement.13–17 Multiple breakout sessions were held to develop action plans, allowing all the WGs and participants to reflect on the outputs of the workshop, as well as describe the opportunities that ought to be addressed using fundamental discovery science, clinical research and implementation science to support the elimination of RHD. Unique features from each breakout session are included in table 1.

Figure 1

The goals of the workshop and pre-meeting activities. ARF, acute rheumatic fever; GAS, group A streptococcal; RHD, rheumatic heart disease.

Table 1

Rheumatic heart disease workshop summary

Vision towards the future

The primordial prevention WG’s analysis demonstrated the important role social determinants of health (SDH) play across the RHD continuum. Members cited the need for real-world evaluation of interventions within a diverse array of endemic settings and low-resource settings. This assessment was founded on historical data where pronounced reductions in acute rheumatic fever (ARF)/RHD incidences have followed improvements in living conditions and modifications to influential SDH.13 Additionally, the primordial prevention WG examined the GAS vaccine landscape and the urgent need to accelerate the movement of vaccine candidates from the discovery stage to clinical evaluation and then to licensure and implementation. Interdisciplinary partnerships were identified as integral in order to support the development of vaccines that are broadly efficacious, tolerable, safe and, most importantly, accessible to those most at risk.17 The primary prevention WG discussions focused on the diagnosis and treatment of GAS infections preceding ARF sequelae in collaboration with community and governmental partners, to enable the codesign of feasible strategies that improve access to available evidence-based interventions.15 The secondary prevention WG addressed questions related to the diagnosis and management of people with established RHD to prevent disease progression including long-term penicillin prophylaxis. Across WGs, there was recognition for the need for screening or active case finding to identify at risk populations and support for the codesign of effective community-based interventions.16 Lastly, tertiary care WG members evaluated topics related to the diagnosis and management of complications of RHD including surgery and palliative care, underscoring the importance of multilevel efforts (health system, provider, community) to improve the uptake of available evidence-based interventions while also supporting the development of novel feasible interventions.14 All WGs emphasised the need to enhance research capacity in LMICs and endemic settings as it relates to basic science, clinical research and implementation science to further support the prevention, diagnosis, treatment and management of RHD.

Through these discussions, several common themes were identified. Specifically, the establishment of an RHD research network could support efforts to (1) strengthen in-country research capacity and training opportunities within endemic settings; (2) develop and adapt common guidelines, procedures and data elements that are appropriate in diverse settings; (3) assess GAS/ARF/RHD burden (including biobanking samples) in endemic settings to appropriately identify at-risk regions; (4) perform clinical trials to evaluate and test evidence based interventions as well as innovative therapeutics accessible within low-resource settings; (5) develop innovative strategies to support multilevel RHD awareness and health literacy; (6) engage with governmental, non-governmental and community partners to improve the diagnosis, and treatment of GAS/ARF/RHD; and (7) continue advocacy to increase funding to address the priorities identified by the WGs. By examining RHD holistically—from the initial streptococcal infection to surgical management of RHD, incorporating concepts across the transitional continuum (from discovery research to implementation science)—we hope that the workshop findings will be a catalyst to stimulate investigator-initiated research, build and strengthen research capacity, identify strategies for improving adherence to guideline-based care for RHD and supporting dissemination and implementation research to promote comprehensive prevention efforts worldwide.

Data availability statement

No data are available.

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  • MYM and AZB contributed equally.

  • Contributors All authors contributed to the development of this manuscript.

  • Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

  • Disclaimer The contents and views expressed in this report are those of the authors and do not necessarily reflect the official views of the National Heart, Lung, and Blood Institute, Fogarty International Center, National Institutes of Health, United States Government, or the affiliated Institutions.

  • Competing interests AZB and AOM have received funding support from the National Institutes of Health. AZB received funding support from American Heart Association, Leducq Foundation, Edwards Lifesciences –Every Heartbeat Matters, The Philips Foundation and Thrasher Pediatric Research Fund.

  • Provenance and peer review Not commissioned; internally peer reviewed.