ADDN: Australasian Diabetes Data Network Value for the T1DCRN and - - PowerPoint PPT Presentation

ADDN:

Australasian Diabetes Data Network

Value for the T1DCRN and community? How can this resource be accessed?

JDRF CRN Meeting April 2015

Study sites and investigators

Phase 1: Major sites in Australia

NSW Maria Craig (PI), Kim Donaghue WA Tim Jones (PI), Liz Davis QLD Andrew Cotterill, Jerry Wales VIC Fergus Cameron SA Jenny Couper, Elaine Tham NZ Craig Jefferies

ADDN Key Personnel

• Project officers:

– Helen Clapin and Helen Phelan

• Data base developers:

– Richard Sinnott and Loren Burns

• ADDN management committee

– Includes JDRF

• APEG secretariat

ADDN

• ADDN is a population based longitudinal

register of young people with diabetes, from Australia and New Zealand

• Links clinical databases in diabetes centres to

a central web-based database, containing de- identified data

• Database contains demographic information,

clinical characteristics, management and complications/comorbidities

ADDN Objectives:

Overall aim is to establish a secure, centralised data repository containing de-identified longitudinal data, which facilitates research and improves the health of people with type 1 diabetes by enabling:

• 1. Population based recruitment of patients with

specific characteristics for trials in new onset and established type 1 diabetes

ADDN Objectives 2:

• 2. Act as a database of interventions and
• utcomes over time, allowing researchers to

conduct prospective and retrospective analyses and hypothesis generating research

• 3. Hold clinically relevant data, enabling

participating hospitals to audit, benchmark and review clinical practice and patient outcomes

• 4. Support advocacy on behalf of individuals and

groups of people with diabetes by providing epidemiological data and clinical evidence.

Progress – April 2015

• Phase 1 nearing completion
• Consent obtained on > 6000 people with T1D
• Five major sites contributing data to ADDN

Centre State Patients Princess Margaret Hospital for Children WA 952 Children’s Hospital at Westmead NSW 1204 Women’s and Children’s Hospital, Adelaide SA 419 Royal Children’s Hospital, Melbourne Vic 1330 Lady Cilento Children’s Hospital, Brisbane Qld 507

ADDN interface:

• Contains a dashboard that gives an overview
• f the project status
• A registry query tool that can be used to

establish the number of patients meeting a broad range of selection criteria (to assist with study planning)

• Users can request a range of reports with fully

configurable parameters

ADDN Phase 2

• PIs appointed by APEG and ADS

– Maria Craig, Tim Jones, Peter Colman

• Request for funding submitted March 2015
• EOI sought for participation by paediatric and

adult centres – aim to include 16 additional sites by end of Phase 2

• Discussions underway to establish

international collaborations

ADDN potential research questions

• Prediction of clinical outcomes based on patient

characteristics, immunological signatures, biomarkers at diagnosis/beyond

• Effects of technological interventions
• Risk factors predicting outcomes including

complications and hypoglycaemia

• Correlates of psychosocial morbidity
• Benchmarking and comparison with

international centres

How can ADDN data be accessed?

• Governance framework established
• Data access and publication policy developed

– Currently awaiting sign off

• General principles:

– Discuss concept with ADDN co-ordinator or ADDN investigator(s); submit request for data; application assessed by ADDN committee

• Will require revision in Phase 2 and beyond

Timeline

Conclusions

• ADDN now established with five major centres

contributing data on > 4000 patients across Australia

• Phase 2 planning underway – aim to include

wider spectrum of paediatric & adult centres

• Key components of next phase include access

to data and research output