CCHS Website

AIMS of the European Consortium on Central Hypoventilation Syndromes

The main aim of the European Network for CCHS patients and families is to give information about this rare disease and to allow clinicians and families to reach their hospital and their laboratory for diagnosis and treatment.

• Important differences exist for CHS across Europe, including:

• Access to information which is not available in the corresponding language for most countries,
• Access to high-quality functional and genetic diagnosis,
• Availability of CHS specialists (some centres may follow up a single patient ; clinicians
• may have difficulties in answering questions to patients and families without using medical jargon),
• Availability of home ventilation services (in some countries, patients may wait months in pediatric intensive care unit before home ventilation comes to be available),
• Availability of social and home care services (families may be assisted by a nurse 24/24 at home or on the contrary, left on their own, depending on the country),
• Patient outcomes and quality of life have not been fully investigated.

The network will create a database for European patients allowing detailed information about the disease and about clinical characteristics of European CHS population The value generated by the register will be description of demographics and outcomes of CHS across Europe, description of subpopulations of CHS.

European standards and guidelines for diagnosis and treatment of CHS will be determined. As CHS is a very rare disease, a few studies are available. The formal expert panel consensus method will be used to determine standards and guidelines. The work will rely on literature review, on evidence-based knowledge on CHS and on expert experience. Three mains topics will be developed :

• State of the art for the diagnosis and treatment in children and adults
• Treatment recommendations
• Guidelines for follow-up of patients

A Website is available and will become more and more useful during the months with the support of the visitors, with their comments and suggestions. It will be a multi-lingual website and will be developed for dissemination of European standards and guidelines for management.

An European conference will be organized in Warsaw April 13-15th 2012 allowing all clinicians and families to meet each other and to match knowledge and practical details.

A system of quality will define the standards of care for CHS patients identifying the needs for the so called centre of reference. Quality standards required for being a CHS centre will be determined, as well as schemes for internal and external quality assessment of CHS centres and home health care services.

Standards of home care will be defined too, indicating what territorial structures will have to offer to home cared patients (equipment, assistance, founding, etc.)