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ACSQHC-ARCR-291

Prioritised clinical domain
High burden cancers
Abbreviation
ALLG NBCR
Registry contact

Australasian Leukaemia & Lymphoma Group info@allg.org.au

Year established
2012
Description

The ALLG NBCR is a national registry collecting clinically annotated data and biospecimens from a patient with a haematological malignancy with a focus on AML, ALL, UL and MDS. Treatment and clinical outcome data are collected for patients and the Australasian haematology community of ALLG members utilise data to inform practice, consider clinical trial inclusion, and to conduct research.

Reporting process

The ALLG NBCR is governed by several committees with regular reporting and feedback mechanisms.  The ALLG Registry Operations Committee (ROC) oversees the day-to-day operations and performance metrics of the registry to ensure key targets are met.

The ALLG Scientific Advisory Committee liaise with the ALLG ROC to direct the scientific validity and direction.

The ALLG membership is provided with regular updates, including the ALLG Biannual Scientific Meeting. 

There are also regular reporting mechanisms to the approving HRECs and RGOs via annual reports. 

Patient Reported Outcome Measures (PROMs)

Offered to patients with Myelodysplastic syndromes (MDS)

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory

  • Canberra Hospital

New South Wales

  • Blacktown Hospital
  • Border Medical Oncology Research Unit
  • Concord Hospital
  • Gosford Hospital
  • Liverpool Hospital
  • Calvary Mater Hospital
  • Nepean Hospital 
  • Orange Health Service
  • Princes of Wales
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent's Sydney
  • The Tweed Hospital
  • Wollongong Hospital

Northern Territory

  • Royal Darwin Hospital

Queensland

  • Gold Coast Hospital
  • Icon Cancer Centre
  • Princess Alexandra Hospital
  • Royal Brisbane Hospital
  • Rockhampton Hospital
  • Sunshine Coast Hospital 
  • Toowoomba Hospital
  • Townsville Hospital

South Australia

  • Royal Adelaide Hospital
  • Flinders Medical Centre
  • Queen Elizabeth Hospital

Tasmania

  • Royal Hobart Hospital
  • Launceston Hospital

Victoria

  • Alfred Hospital
  • Austin Hospital
  • Box Hill Hospital
  • Geelong Hospital
  • Monash Health
  • Northern Hospital
  • Royal Melbourne Hospital
  • Peter MacCallum Hospital
  • St Vincent's Melbourne

Western Australia

  • Fiona Stanley Hospital
  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital

New Zealand

  • Auckland Hospital
  • Christchurch Hospital
  • North Shore Hospital 
  • Waikato Hospital
  • Wellington Hospital
Condition
Haematological malignancy
Name
Australasian Leukaemia and Lymphoma Group National Blood Cancer Registry
Lead organisation
Australasian Leukaemia & Lymphoma Group
Ethics approval reference
All participating sites are approved by a nominated HREC and their institutional research governance office. A Clinical Trial Research Agreement is also executed between the ALLG and each participating site.
1. Alfred Hospital HREC - Ref # 181/12
2. Canberra Hospital HREC - Ref # 3/13/049
3. Royal Darwin Hospital - Menzies School of Health Research Ref # HoMER13-1985
4. Royal Hobart Hospital HREC Tasmania Network Ref # HH0012836
5. Launceston Hospital HREC Tasmania Network Ref # HH0016511
6. The Queen Elizabeth Hospital HREC – Ref # HREC/12/TQEHLMH/35
7. Sir Charles Gairdner Hospital HRECRMH HREC – Ref # RGS0000001649
8. Royal Melbourne Hospital -Melbourne Health HREC – Ref # HREC/12/MH/106
9. Northern B Health and Disability Ethics Committee (NZ) – Ref # 21/NTB/115
Preferred published date
Immediately
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