Technical solution for data collection, data safety and data privacy legislation: Experiences from the SWEET study

Pediatric Diabetes

Volumn 13, Issue SUPPL. 16, 2012, Pages 39-48

  Forsander, Gun ^a   Pellinat, Martin ^b   Volk, Michael ^c   Muller, Markus ^c   Pinelli, Leonardo ^d   Magnen, Agnes ^e   Danne, Thomas ^f   Aschemeier, Bärbel ^f   de Beaufort, Carine ^g  

^a QUEEN SILVIA CHILDREN'S HOSPITAL   (Sweden)

^b Vision Tree Software Inc   (United States)

^c Axaris Software and Systeme GmbH   (Germany)

^d UNIVERSITY OF VERONA   (Italy)

^e SANOFI   (France)

^f Diabetes Centre for Children and Adolescents at the Kinder und Jugendkrankenhaus AUF DER BULT   (Germany)

^g DECCP   (Luxembourg)

Author keywords

Data collection; Diabetes mellitus; Pediatrics; Registers; Safety; SWEET

Indexed keywords

ARTICLE; COMPUTER; DATA BASE; INFORMATION PROCESSING; LAW; LEGAL ASPECT; ONLINE SYSTEM; PRIORITY JOURNAL; QUALITY CONTROL;

ADOLESCENT; CHILD; COMPUTER SECURITY; CONFIDENTIALITY; DATA COLLECTION; DATABASES, FACTUAL; DIABETES MELLITUS; ENDOCRINOLOGY; EUROPEAN UNION; HUMANS; INTERNATIONAL COOPERATION; MANAGEMENT INFORMATION SYSTEMS; MODELS, BIOLOGICAL; REFERENCE STANDARDS; REGISTRIES;

EID: 84865606158     PISSN: 1399543X     EISSN: 13995448     Source Type: Journal    
DOI: 10.1111/j.1399-5448.2012.00911.x     Document Type: Article

References (13)

1. European Union. (available from http://www.ec.europa.eu/health/strategy/docs/ev20090428_rd01_en.pdf).
2. Gudbjörnsdottir S, Cederholm J, Nilsson PM, Eliasson B. The National Diabetes Registry in Sweden: an implementation of the St Vincent Declaration for Quality improvement in Diabetes Care. Diabetes Care 2003: 26: 1270-1276.
3. Collmann C, Coleman J, Sostrom K, Wright W. Organizing safety: conditions for successful information assurance programs. Telemed J E Health 2004: 10: 311-320.
4. Opinion of the European Data Protection Supervisor. (available from idpc.gov.mt/dbfile.aspx/EDPS_11.pdf)
5. Ducan B, Lubchenco LO, Hansman C. Growth charts for children 0 to 18years of age. Pediatrics 1974: 54: 497-502.
6. Simckes AM, Srivastava T, Alon US. Ambulatory blood pressure monitoring in children and adolescents. Clin Pediatr (Phila) 2002: 41: 549-564.
7. Jaisson S, Guillard E, Leroy N, Gillery P. Comparison of analytical interferences on HbA1c measurement by two high pressure liquid chromatography analyzers. Ann Biol Clin 2011: 69: 63-69.
8. Margeirsdottir HD, Larsen JR, Kummernes SJ, Brunborg C, Dahl-Jorgensen K. The establishment of new national network leads to quality improvement in childhood diabetes: implementation of the ISPAD Guidelines. Pediatr Diabetes 2010 Mar: 11: 88-95.
9. Patterson CC, Dahlqvist G, Gyurus E, Green A, Soltesz G. Incedence trends for childhood diabetes type 1 in Europe during 1989-2003 and predicted new cases 2005-2020: a multicentre prospective registration study. Lancet 2009: 373: 2027-2033.
10. Hanberger L, Samuelsson U, Lindblad B, Ludvigsson J. A1c in children and adolescents with diabetes in relation to certain clinical parameters: The Swedish Childhood Diabetes Registry SWEDIABKIDS. Diabetes Care 2008: 31: 927-929.
11. Control Diabetes, Trial Complication. Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin dependent diabetes mellitus: diabetes control and complication trial. J Pediatr 1994: 125: 177-188.
12. Milton B, Holland P, Whitehead M. The social and economic consequences of childhood-onset type 1 diabetes mellitus across the life course: a systematic review. Diabet Med 2006: 23: 821-829.
13. Munthe C, Sandman L, Cutas D. Person Centered care and shared decision making: Implications for ethics, public health and research. Health Care Anal 2012: 20: 231-249.