The collection of data on assisted reproduction treatments in the UK: Recommendations by BFS and ACE

Human Fertility

Volumn 16, Issue 2, 2013, Pages 112-120

  Stewart, Jane A ^a   Murdoch, Alison P ^a  

^a Newcastle upon Tyne Hospitals NHS Trust   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; EMBRYO TRANSFER; HEALTH CARE COST; HEALTH CARE ORGANIZATION; HEALTH CARE QUALITY; HUMAN; INFERTILITY THERAPY; INFORMATION PROCESSING; LAW; MEDICAL SOCIETY; PATIENT INFORMATION; PATIENT SELECTION; PUNISHMENT; QUALITY CONTROL; TREATMENT OUTCOME; UNITED KINGDOM;

GREAT BRITAIN; HEALTH CARE SURVEYS; HUMANS; INFERTILITY; REPRODUCTIVE TECHNIQUES, ASSISTED; SOCIETIES, MEDICAL;

EID: 84879217224     PISSN: 14647273     EISSN: 17428149     Source Type: Journal    
DOI: 10.3109/14647273.2013.770239     Document Type: Article

References (38)

1. Adab, P., Rouse, A.M., Mohammed, M.A., & Marshall, T. (2002). Performance league tables: the NHS deserves better. British Medical Journal, 324, 95-98.
2. Adcroft, A. & Willis, R. (2005). The (un)intended outcome of public sector performance measurement. International Journal of Public Sector Management, 18, 386-400.
3. BFS. (Personal Communication 2013). Stakeholder paper re donor conceived data (In preparation)
4. Bonduelle, M., Liebaers, I., Dekatelaere, V., Derde, M.P., Camus, M., Devroey, P., & Van Steirteghem, A.C. (2002). Neonatal data on a cohort of 2889 infants born after ICSI (1991-1999) and of 2995 infants born after IVF (1983-1999). Human Reproduction, 17, 671-694.
5. Data Protection Act. (1998). www.legislation.gov.uk/ukpga/1998/29/ contents
6. European Union Tissue and Cells Directive. (2006). http://eur-lex. europa.eu/LexUriServ/LexUriServ.do?uri-OJ:L:2006:294: 0032:0050:EN:PDF
7. Giuffrida, A., Gravelle, H., & Roland, M. (1999). Measuring quality of care with routine data: avoiding confusion between performance indicators and health outcomes. British Medical Journal, 319, 94-98.
8. Heath, I., Hippesley-Cox, J., & Smeeth, L. (2007). Measuring performance and missing the point? British Medical Journal, 335, 1075-1076.
9. HFEA. (2003). Minimum Data Set. 125th meeting of HFEA. http://www.hfea.gov.uk/2239.html
10. HFEA. (2006a). Historic Audit CH(04)06;
11. Historic Audit Project (2003) HFEAUpdate 1;2;
12. Historic Audit project. (2005).HFEA Authority Paper;
13. HAP Update (2006) HFEA Update. p4;
14. Appendix 92 (2005) Supplementary Evidence from the HFEAhttp://www. publications.parliament.uk/pa/cm200405/cmselect/cmsctech/7/7we102.htm.
15. HFEA. (2006b).Electronic Data Interchange (2006) HFEA Chairs Letter; CH(06)05
16. HFEA. (2007). An Introduction to the HFEA Register. A long term analysis of the HFEA Registerdata 1991-2006.p8
17. HFEA. (2009a). Human Fertilisation and Embryology Authority; A Hampton Implementation Review Report ;
18. HFEA. (2009b).Collecting and recording information for the HFEA. HFEA Directions 0005 v2
19. HFEA. (2009c). SP Donor sperm procurement form.HFEA http://www.hfea.gov. uk/docs/Donor-sperm-procurement.pdf
20. HFEA. (2011a).Clinic Focus HFEA Newsletter. Dec.
21. HFEA. (2011b). HFEA: Compliance update/data review/donation review. Meeting for Persons Responsible and Senior Staff Meeting. London. British Fertility Society.
22. HFEA. (2011c).Multiple births (2011) HFEA Directions 0003 v3.
23. HFEA. (2011d). CD parts 1 and 2-consent to disclosure of identifying information HFEA ;
24. HFEA. (2011e). CD part 2 research purposes-consent to disclosure of identifying information HFEA ; www.gov.uk/docs/HFEA-CD-form-research-purposes- 28-02-2011
25. HFEA. (2012).Responding to requests for donor information HFEA Chairs Letter; CH(12)01
26. HFEA (2013a). Form R HFEA EDI ; www.hfea.gov.uk/docs/091012female- patient-reg.pdf and www.hfea.gov.uk/docs/09101 9partner-reg.pdf
27. HFEA. (2013b). IUIP Annual Return Forms, http://www.hfea.gov. uk/2508.html
28. HFEA. (2013c). Good governance and record keeping. HFEA Renewal Inspection Report Part 4 Human Fertilisation and Embryology Act. (1990) ; www.legislation. gov.uk/ukpga/1990/37/contents
29. Human Tissue Regulations (Quality and Safety for Human application) (2007) ; www.legislation.gov.uk/uksi/2007/1523/contents/made
30. Loeb, J.M. (2004). The current state of performance measurement in health care. International Journal for Quality in Health Care, 16(Suppl. 1), i5-i9.
31. Magee, H., Davis, L-J., & Coulter, A. (2003). Public views on health care performance indicators and patient choice. Journal of the Royal Society of Medicine, 96, 338-342.
32. McKee, M. & Sheldon, T. (1998). Measuring Performance in the NHS: Editorial. British Medical Journal, 316, 322.
33. Nelson, S.M. & Lawlor, D. (2011). Predicting Live Birth, Preterm Delivery, and Low Birth Weight in Infants Born from In Vitro Fertilisation: A Prospective Study of 144,018 Treatment Cycles. Public Library of Science, Medicine, 8(1). Jan 4; 8(1): e1000386.doi:10.1371/journal.pmed.1000386.
34. Powell, A.E., Davies, H.T.O., & Thomson, R.G. (2003). Using routine comparative data to assess the quality of health care: understanding and avoiding common pitfalls. Quality and Safety in Health Care, 12, 122-128.
35. Roberts, S.A., McGowan, L., Hirst, W.M., Brison, D.R., Vail, A., & Lieberman, B.A. (2010). Issues in the use of routine clinical data for modelling studies. In: Towards single Xembryo transfer? Modelling clinical outcomes of potential treatment choices using multiple data sources: predicitive models and patient perspectives. Health Technology Assessment, 14, 131-136.
36. Schendelaar, P., Middelburg, K.J., Bos, A.F., Heineman, M.J., Jongbloed-Pereboom, M., Hadders-Algra, M. (2011). The Groningen ART cohort study: the effects of ovarian hyperstimulation and the IVF laboratory procedures on neurological condition at 2 years. Human Reproduction, 26, 703-712.
37. Warnock Report. (1984). HMSO
38. Wisborg, K., Ingerslev, H.J., & Henriksen, T.B. (2010). In vitro fertilization and preterm delivery, low birth weight, and admission to the neonatal intensive care unit: a prospective follow-up study. Fertility & Sterility, 94, 2102-2106.