Recording and measuring the outcome of an ART cycle Australian and New Zealand Reproduction Database (ANZARD) Dr Katie Harris Biostatistician National Perinatal Epidemiology and Statistics Unit (NPESU) katie.harris@unsw.edu.au
Outline of presentation Australian and New Zealand Assisted Reproduction Database (ANZARD) History Structure and scope Data collection and validation Updates Reporting Research
History of ANZARD Assisted Conception Data Collection (ACDC) 1979 2001 Contains pregnancy and birth outcomes following ART treatment Australian and New Zealand Assisted Reproduction Database (ANZARD) 2002 2008 Includes treatment cycles and pregnancy outcomes
ANZARD2.0 2009 present All ART treatment cycles in Australia and New Zealand 40 fertility centres (83 clinics in Aus & 8 in NZ) Link treatment cycles for same patient using statistical linkage key First two letters of first name and surname & Date of Birth Each row of data is a cycle Annually: 70,000 cycles, 37,000 Women 94 Data Items ANZARD3.0 coming soon
Scope of ANZARD
Structure of ANZARD Patient demographics Name code, age, parity, cause of infertility, postcode Treatment procedures Fertilisation: IVF, ICSI, GIFT PGD (preimplantation genetic diagnosis) Embryo transfer: Cleavage, Blastocyst, SET, DET Cryopreservation: Slow frozen, vitrified Donation and recipient cycles: Oocytes, embryos Outcomes Clinical pregnancy: Live delivery, early pregnancy loss Birth outcomes: Sex, gestational age, birthweight, plurality, Perinatal mortality
Purpose of ANZARD Monitoring the safety and quality of ART treatment Informing clinical practice Providing evidence through annual reporting and research for policy development Conducting research and international comparison
Data submission and 2015 report timeline 2015 data submitted Cycles 1 st Jan 2015 31 st Dec 2015 Deliveries up to 31 st Oct 2016 Australia and New Zealand feedback report release 2015 ART report published Oct 2016 Nov 2016 Dec 2016 Jan 2017 Feb 2017 Mar 2017 Apr 2017 May 2017 Jun 2017 Jul 2017 Aug 2017 Sep 2017 Oct 2017 NPESU validates and finalises data 2015 ART report produced
Upgrading ANZARD Updating validation program Clinics upload data via a secure web portal Manual entry form Batch upload Real-time validation Update database management and analysis system SQL R Modify system used by the Australian and New Zealand Neonatal Network (ANZNN)
ANZNN Data capture system - https://anznn.med.unsw.edu.au/ Information - https://anznn.net/dataresources/datacapturesystem
Benefits of new system Much better for clinics - Easy navigation and user friendly interface Two levels of user accounts Timely validation and feedback procedure Offers transparency in validation process Streamline production of feedback reports
ANZARD3.0 Data items Opportunity to remove / include data items Remove Transportation cycles (Import, export, disposal) Include Height, Weight, Same sex and single parent family indicator, PGD or PGS, treatment type Improve next slide
Items for improved reporting Stim_1st Important due to use in defining a first cycle within ANZARD Reliant on patient reporting Causes confusion where there is an OPU cancellation Preg_20w Reliant on patient reporting All cause of infertility variables Ongoing medical journey of patient makes it difficult to validate this variable at a patient level Should ANZARD be checking for consistency within a patient or assume diagnosis can change over time? Name and date of birth details Important due to use in linking cycles Slight data entry errors can cause difficulty in linking cycles (e.g. DOB changing by one digit) Some changes in name are unavoidable, e.g. after marriage Validation process now uses pat_id to ensure that name and fdob are as consistent as possible within a data submission PR_CLIN If a clinical pregnancy is recorded then the date pregnancy ended (PR_END_DT) must be completed
Reporting Overview of ART treatment Autologous and donation/recipient cycles Pregnancy and birth outcomes following autologous/recipient cycles Other cycle types, procedures and treatment complications Trends in ART treatment and outcomes Linking and follow up of women and cycles
Tables and Figures from 2014 ANZARD report
91.1% 13.7% 65.0% 19.8% 15.3%
93.6% 30.9% 23.6%
Different rates
Live delivery among fertility centres
Other procedures Gestational surrogacy cycles Preimplantation genetic diagnosis Assisted hatching Gamete intrafallopian transfer Ovarian hyperstimulation syndrome
Slow frozen cleavage stage Vitrified cleavage stage Vitrified blastocyst
Cycle specific live delivery rates
Research projects Cumulative live birth rates Method for assessing variation in clinic success rates Socio-economic disparities in access to assisted reproductive technologies in Australia Health economics
National Perinatal Epidemiology and Statistics Unit (NPESU) ANZARD team Dr Katie Harris Mr Oisin Fitzgerald Mr Repon Paul A/ Prof Georgina Chambers
Acknowledgements Thank you to the Australia and New Zealand fertility centres for the provision of the ANZARD data. Katie Harris Tel: 02 9385 9462 Email: Katie.harris@unsw.edu.au ANZARD Team: ANZARD@unsw.edu.au Report available: http://npesu.unsw.edu.au