Establishment of a Registry of Children with Autism Spectrum Disorder in North East England –
  Daslⁿe

Principal Investigators: Professor Helen McConachie

Collaborator(s): Professor Allan Colver; Professor Ann Le Couteur; Professor Louise Parker

Project Staff : Anna Spencer; Mary Johnson

Funding: The Northern Rock Foundation;  participating local authorities

1 November 2002 - ongoing

Currently Recruiting

Abstract:

Daslⁿe is a database of children with autism spectrum disorder living in the North East.

The essential features of Daslⁿe are: It is an ongoing prospective database. The setting up phase requires a cross-sectional survey to identify all children with ASD; however, all the procedures are ongoing (to 18 years of age), and it will capture information on future children as they are diagnosed.

Families have been fully involved in all aspects of strategy, procedures and the detail of questionnaires. This process has been facilitated by three years starting up grant from the Northern Rock Foundation.

The database is multi-sectoral at the professional level. The responsibility for identifying cases in each district lies with a local co-ordinating group (drawn from paediatrician, educational psychologist, speech and language therapist, social worker, specialist teacher, and parent support group coordinator).

It is also multi-sectoral at strategic level. Its development phase was supported by Directors of Education, Social Services and Health, the University of Newcastle and Contact a Family. The statutory agencies have agreed to finance it after the development phase. The primary aims of Daslⁿe are to identify all children with ASD and hence to assist local authorities, health services and voluntary bodies in planning their services for children with autism spectrum disorder. Reports on numbers of children and their broad needs will be made available and the project should allow families to be more involved in service planning.

It will also allow epidemiological analysis of the data to investigate, for example, trends over time or geographical variations to be a representative sampling frame for research studies.