RHDnet – THE FIRST GLOBAL NETWORK DEDICATED TO RHEUMATIC HEART DISEASE
The Rheumatic Heart Disease Network (RHDnet) is the World Heart Federation’s internet-based resource and communication centre for rheumatic heart disease. RHDnet can be accessed through the website and has been developed as a free resource for health professionals and communities around the world.
The site offers training tools and resources to assist rheumatic heart disease control and it aims to address some of the problems associated with isolation and limited access to resources in areas where the disease is still common.
A members’ Discussion Forum has also been established to promote communication between health professionals and allow them to share experiences on practical aspects of rheumatic heart disease control.
Helping improve control of Rheumatic Heart Disease
Sara Noonan, Technical Advisor for the World Heart Federation Rheumatic Control Project in the Pacific has years of hands-on experience in RHD control. She assists health organizations around the world to adapt the RHDnet resources for local requirements. Currently she is providing technical assistance to Tonga, Fiji, Samoa, Tuvalu, Saipan (Commonwealth of the Northern Mariana Islands) and Nauru and is in touch with the National Cardiology Institute in Brasil as it translates one of the RHDnet register databases into Portuguese and modifies it for local use.
“Many countries have pieces of information about people with RHD, usually held at the point of service” she explains. “such as Benzathine injection information, surgery details, echocardiogram results; but these are scattered and clinicians and health planners have difficulty understanding the burden of RHD at the population level. The RHDnet registers help to consolidate information and report more complete information.” Using a register can improve coordination of patient care and guide planning. Information from an RHD register in the Kingdom of Tonga has alerted health authorities and funding organizations to the national impact of RHD. In Fiji, register reports have helped identify patterns of secondary prophylaxis delivery and have helped to identify staff, patients and family who need more support.
Navigating the website
RHDnet is divided into two sections and is aimed at different audiences:
- Families and Communities: this section contains general information about acute rheumatic fever and rheumatic heart disease for individuals with disease, their families, and community groups.
- Health Professionals: this section includes best practice resources developed by the World Heart Federation that can be modified to suit local needs, including health worker training materials, register databases and data collection forms. An International materials section includes high profile peer-reviewed publications as well as guidelines and information sourced and linked from other websites and programmes.
Members’ Discussion Forum: linking up experts in rheumatic health disease
The Discussion Forum is aimed at clinicans and others directly involved in the control of rheumatic heart disease. It enables them to communicate on matters related to acute rheumatic fever and rheumatic heart disease.
New members can register by submitting an RHDnet Contact Form and selecting “Register for Members’ Forum” in the subject line. We currently have members from almost all continents (see below). RHDnet is currently being developed and we encourage feedback and submission of international resources from appropriate individuals and organizations.
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Join the forum and take part in the first case presentation
We are pleased to welcome Dr Andrew Steer as our first Forum case presenter. Andrew trained as a paediatrician and infectious disease specialist in Australia, and has been working on the Group A Streptococcal Project in Fiji since 2005. Andrew is now in Vancouver, Canada working on Natural immune correlates of protection for group A streptococcal vaccine candidates at the Centre for Clinical Research Excellence.
We invite existing and new members to join the case discussion, which is now available through the Forum and addresses unusual presentations of acute rheumatic fever. A discussion summary will be included in the next Heart Beat.
For more information: www.worldheart.org/rhd or email: rhdnet(at)worldheart.org
