Needs assessment and review of services for people with inherited metabolic disease in the United Kingdom

Journal of Inherited Metabolic Disease

Volumn 29, Issue 5, 2006, Pages 667-676

  Burton, Hilary ^a   Sanderson, Simon ^b   Shortland, Graham ^c   Lee, Philip ^d  

^a Public Health Genetics Unit   (United Kingdom)

^b UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^c UNIVERSITY HOSPITAL OF WALES   (United Kingdom)

^d NATIONAL HOSPITAL FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL EFFECTIVENESS; EVIDENCE BASED PRACTICE; FOLLOW UP; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HEALTH PROGRAM; HEALTH SERVICE; MEDICAL AUDIT; MEDICAL SPECIALIST; METABOLIC DISORDER; NEEDS ASSESSMENT; NEWBORN SCREENING; PATIENT REFERRAL; REVIEW; SCORING SYSTEM; SCREENING TEST; UNITED KINGDOM;

ADULT; CHILD; DELIVERY OF HEALTH CARE; EVALUATION STUDIES; EVALUATION STUDIES AS TOPIC; GENETIC DISEASES, INBORN; GREAT BRITAIN; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HEALTH SERVICES RESEARCH; HUMANS; METABOLIC DISEASES; NEEDS ASSESSMENT; PROGRAM EVALUATION; QUALITY OF HEALTH CARE; QUESTIONNAIRES;

EID: 33748714150     PISSN: 01418955     EISSN: 15732665     Source Type: Journal    
DOI: 10.1007/s10545-006-0374-0     Document Type: Review

References (6)

1. British Inherited Metabolic Disease Group (2004) Inherited Metabolic Disorders. A service vision for setting standards of care and their provision. http://www.bimdg.org.uk/BIMDG_Vision.asp (last viewed 28 July 2006).
2. British Paediatric Surveillance Unit (2005) Medium chain acyl CoA dehydrogenase deficiency (MCADD). British Paediatric Surveillance Unit Annual Report 2004-2005. http://www.bpsu.inopsu.com/publications/ annual_reports/annual-report_2.
3. Burton H (2005) Metabolic Pathways: Networks of Care. A needs assessment and review of services for people with inherited metabolic disease in the United Kingdom. Cambridge: Public Health Genetics Unit.
4. de Valk HW (2004) Inborn errors of metabolism in adulthood - Results of an international survey. In: Burgard P, Lee PJ, Wendel U, eds. Inborn Errors of Metabolism - Pathways into Adulthood. International Symposium 2002, Fulda. SPS.
5. Dionisi-Vici C, Rizzo C, Burlina AB, et al (2002) Inborn errors of metabolism in the Italian pediatric population: A national retrospective survey. J Pediatr 140: 321-327.
6. Walter JH (2004) Specialist service for children and adults with metabolic disease: Training and resource allocation. In: Burgard P, Lee PJ, Wendel U, eds. Inborn Errors of Metabolism - Pathways into Adulthood. International Symposium 2002, Fulda. SPS.