We are currently developing international guidelines for cardiac (heart) disorders associated with babies, children, young adults and adults with Down syndrome.

The challenge

Although a great deal is known about cardiac disorders in people with Down syndrome, there is no international consensus guidance to stipulate best practice for diagnosis, management and treatment. There is a pressing need to address this issue so that people with Down syndrome can be offered the necessary and most effective cardiac health management across the world.

What we are doing

Internationally renowned specialist cardiologists have joined with us to work on this project. They are following a rigorous guideline development process to ensure global credibility and encourage future implementation of the guidelines worldwide. 

To ensure the information in the guideline is of global relevance and value, we will be seeking feedback from our global network of stakeholders at key stages of the project. Stakeholders will include health professionals and Down syndrome organisations from around the world that have personal experience, knowledge or special interest in the cardiac disorders associated with people with Down syndrome or who represent people whose practice or care may be affected by the guideline. 

Long term impact

Improving health outcomes and saving lives.

To illustrate the potential impact of these guidelines, an important area which will be covered is the management of heart defects in babies, which affect about half of all babies with Down syndrome. Heart screening is generally accepted to be a routine procedure in babies with Down syndrome, but a lack of definitive guidance means it is still not being carried out in many cases. Screening babies with Down syndrome can indicate if life-saving surgery and vital medication is required so that defects can be properly managed.

The guidelines will be disseminated via our global network to healthcare professionals, Down syndrome and related healthcare and disability organisations and to commissioners of services. 

Delivery of these evidence-based, systematic and transparent methods of best practice should make a huge positive difference to the quality of cardiac healthcare delivered to people with Down syndrome across the world. They will provide a global reference point and should enable greatly improved health outcomes in countries around the world.