INIS – the Australian Experience Oxford - 12-13 September 2005 Priya Duggal-Beri

1. INIS – the Australian Experience Oxford - 12-13 September 2005 Priya Duggal-Beri

2. The ANZ Team

3. The ANZ Way • Australia (680) • 17 active centres • NZ (172) • 7 active centres

4. Sites in ANZ *Westmead Hospital *Liverpool Hospital *Royal Hospital For Women *Royal North Shore *RPA Women and Babies *The Children’s Westmead *Nepean *Women’s and Children’s *Flinders Medical Centre *Royal Women’s Brisbane *National Women’s *Middlemore Hospital *Waikato Hospital *John Hunter Hospital *Canberra Hospital *Wellington Women’s Hospital *Monash Medical Centre *Royal Children’s Hospital *Mercy Hospital for Women *Royal Women’s Melbourne *Palmerston North *Royal Hobart Hospital *Christchurch Women’s Hospital *Dunedin Hospital

5. ANZ and UK Recruitment

6. Targets for centres • Each site has a set target to recruit to – based on the number of hospital beds • Based on estimates at the start of the study • Have changed the target for some centres that recruited more or less than the initial set target

7. Actual/Target Data as at 22/8/05

8. Eligibility Log

9. Actual recruitment /Eligible babies Data as at 22/8/05

10. Reasons why families may not participate Of 647 families that said no… 1 - Eligible, not approached for consent, open label IVIG was given - Doctor's decision 2 - Eligible, not approached for consent, open label IVIG was not given - Doctor's decision 3 - Eligible, consent refused by parents, open label IVIG was given 4 - Eligible, consent refused by parents, open label IVIG was not given

11. % Families that say yes when approached Families were approached but chose not to participate, did not give a reason for not participating are compared with families who chose to participate.

12. Baby Birthweight

13. Baby Gestational Age

14. INIS in ANZ • Recruitment to discharge – similar to UK • Follow Up • 1 year follow up • Helps sites stay in touch with families • Economic evaluation • 2 year follow up • Parent and Paediatrician Questionnaires • Bayley Scales of Assessment II

15. ANZ status • Completed 2 year follow Up: 97% (completed or booked appts) • Completed 1 year follow Up: 96% • >1 year old: 413 babies • Babies older than 2 years: Staying in touch using Christmas cards/ newsletters. • TOTAL RECRUITMENT: 870

16. Babies/NICUs by region • Total births per NICU are greater in ANZ than the UK. • Proportionately fewer NICUs in ANZ than in UK. • ANZ Nurses have relatively greater funding and support Annual Births in UK vs. ANZ

17. ANZ Recruits • We encourage a wide spectrum of illness severity babies to be recruited • Relatively lower overall mortality rate

18. Parent Newsletters • Includes • Parents story • Recipe • Games • INIS news • Stay in touch • “Clinical trials” information

19. Letters from Parents • Letters from parents about the recipes • Letters thanking us for staying in touch • A mother asked for her second baby to be recruited to INIS, and he/ she was!

20. Common Link? • Enthusiasm of everyone across both hemispheres • We applaud our collaborators and nurses, in Europe and ANZ, for the hard work they do. • Thank you!