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Welcome to the Quarterly ACFDR Newsletter

Issue #8                                                                                                                            May 2020

The ACFDR Team would like to say a huge THANK YOU to all of you for your continuous dedication and hard work.

We recognise the extremely busy schedules of our clinicians, and we really appreciate the time you put aside to ensure quality data entry into the registry.

New ACFDR Team Member!

Many of you will have already had contact with Phoebe Kent, who is the new Registry Coordinator. Phoebe joined the ACFDR in November last year, and comes from a background in nursing.

 Steering Committee Updates
The Data Access Request and Publication Committee (DARPC)  welcomes new members: Dr. Kathryn Frayman, from The Royal Children's Hospital, and Dr. Dan Smith, from The Prince Charles hospital.
CFA will also nominate additional consumer representatives to the DARPC and the Steering Committee. 

Data Quality Assurance Program   


As many of you are aware, Monash introduced the Data QA Program last year.
The primary aim of the program is to enhance the quality of data collection among the Australian CF population.
Sites that have governance approval for the ACFDR Data QA Program will be eligible for payment for data entered up to end of April 2020.
The ACFDR team will be organising payments to sites this month. 

TIP: You can view your site's data completion for 2018, 2019 and 2020 through the Data Quality Assurance Report function on REDcap!
COVID-19 Update: Changes to Data Entry Deadlines
With the emergence of the COVID-19 pandemic this year, we recognise hospitals and clinicians working on the front line have been extremely busy in planning and shifting models of care for their patients.
In response to this, the ACFDR has not set further dates for remaining 2018/2019 data and 2020 quarterly data completion. This will be further discussed at the ACFDR Steering Committee at its next meeting in June.
Remaining 2018 & 2019 data will still be eligible for payment, and a final date for this will also be determined by the ACFDR Steering Committee.
If your site is in a position to continue quarterly data entry, as per the previous schedule, we are happy to discuss quarterly payment with you on a case-by-case basis.
Database Changes to Look Out For
The Steering Committee has decided to implement the following changes

Changes specific to COVID-19:
  • Microbiology – New data item for COVID-19 Test (Positive and Negative)
  • Hospitalisations – New option of Hospitalisation type: (ICU/General Ward/Other)
  • Hospitalisation – New primary reason for Admission:  COVID-19 infection
  • Complications and Treatments – New Oxygen and Ventilation Requirement: Invasive Mechanical Ventilation

Changes on the Microbiology Form
  • Under Bacteria Results we have removed 'Staphylococcus Aureus (SA) multi-drug resistant status'. Staphylococcus Aureus Methicillin Resistance Status (MSSA/MRSA) remains.
  • Under NTM/Smear Positive we have added: 'yes, smear positive but not quantified' as a tick box option

We really value your suggestions around ways to improve data collection within the registry.

The team are currently working on some improvements based on feedback we have received from sites and we will keep you updated on these changes in future Newsletters.
Check out some of our recent Registry Publications:
  1. A Multinational Report to Characterise SARS-CoV-2 Infection in People with Cystic Fibrosis
A report published in The Journal of Cystic Fibrosis on April 25th 2020, looked at the outcomes of 40 patients with CF who were positive for SARS-Cov-2. 

The data was collected through the Registries of 8 participating countries, the Australian ACFDR included.
Although this is an early report and the population is small, the clinical course of SARS-Cov-2 in CF patients appeared similar to the general population, the report showed the outcome of these early cases were better than initially predicted.

Find full report here.
  1. Redesign of the Australian Cystic Fibrosis Data Registry: A multidisciplinary collaboration
This report, authored by Prof. Susannah Ahern, will be published in the Paediatric Respiratory Review this month. The report discusses the transformation of the ACFDR, a 20-year-old registry, in 2018-2019 to enable it to meet the needs of multiple stakeholders into the future.
The report discusses the different aspects of the transformation, including the input and engagement required from a large multidisciplinary team of clinical and other relevant experts.
The resulting database, while being continually refined, is now fit for purpose to support Australian clinicians and researchers in providing best patient care to the CF population.
Contact us if you would like a copy of the report.
ACFDR Annual Report

We are commencing work on the 2019 Annual Report this Month.

Due to the interruptions in 2018 retrospective data entry, we will be releasing a belated 2018 report following the 2019 report in early 2021.
Site Visits
Rasa and Phoebe had planned on visiting some of our Queensland sites earlier this year, although due to the COVID-19 travel bans, we have had to postpone.

We look forward to making these trips later on in the year. It will be great to put a face to our contributing clinicians!
Project Details
Project Leads
Academic Lead
Prof Susannah Ahern

Clinical Lead
Prof Scott Bell

Project Contacts
Phoebe Kent - Registry Coordinator
T: 0402 813 358

Dr. Rasa Ruseckaite - Data Manager & Senior Research Fellow
T: +61 (0)3 9903 0437
You are receiving this newsletter due to your association with the ACFDR. Please forward this email onto colleagues or others interested in the registry. 
Copyright © 2020 Monash University, All rights reserved.
Australian Cystic Fibrosis Registry (ACFDR) - Newsletter
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Australian Cystic Fibrosis Data Registry
School of Public Health and Preventative Medicine
Monash University
553 St Kilda Road
Melbourne, Victoria 3004

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ACFDR Monash University · Level 3 · 553 St Kilda Road · Melbourne, VIC 3004 · Australia

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