Down Syndrome International (DSi) is developing international consensus guidelines in specific areas of health of particular relevance to children, young people and adults with Down syndrome.
The guidelines will provide a global reference point for health professionals, commissioners of services and governmental organisations to encourage adoption of best practice in their countries and to enable much better health outcomes and improve the quality of life for people with Down syndrome worldwide.
We are currently focusing on the development of guidelines for heart disorders, although work in other areas of health has begun. Although a great deal is known about these disorders, there is no international consensus guidance to stipulate best practice for diagnosis, management and treatment.
Internationally renowned specialist cardiologists have now 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. We are confident that funding will shortly be available to evidence and facilitate their work.
To ensure the information in the guideline is of global relevance and value, we will be seeking feedback from stakeholders at key stages of the project. Stakeholders will include organisations from around the world that have personal experience, knowledge or special interest in the heart disorders associated with people with Down syndrome or who represent people whose practice or care may be affected by the guideline. Many of our member organisations will be involved in this way.
The guideline will take approximately two years to develop. We hope to complete the scoping process, which outlines what will be included in the guideline, in six months to coincide with the World Down Syndrome Congress (WDSC) in July 2018. It is hoped the draft guideline will be completed for the WDSC in July 2022. After completion, we will be working to share the information internationally for the benefit of people with Down syndrome across the world.