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Welcome to the Quarterly ACFDR Newsletter

Issue #9                                                                                                                            July 2020

We hope everyone is staying safe and healthy during this time.
As the COVID-19 situation continues to impact the workflow in clinics and hospitals, we wanted to thank you for the continuous time and dedication you put into the ACFDR and data entry. The data is looking stronger than ever, and we have some very exciting projects and research collaborations underway.


ACFDR Staff Update

Phoebe Kent, our registry coordinator, will be taking a deployment to the Victorian DHHS 3-days/week for COVID-19 support.  
Kellie Youngs, our administrative and research assistant, will be re-joining the ACFDR part-time over the next few months to assist with grant proposals, ethics and governance and registry communications. Kellie played a huge role in assisting with the site governance approvals for the Data QA program last year. 


Data Quality Assurance Program: Updated Minimum Data Set (MDS) & 2020 Deadlines
Following our analysis of the recent survey sent out to sites, and discussions among the ACFDR Steering Committee, we have developed an updated MDS for 2020 data entry and updated data entry deadlines for payment for the final 2018/19 data and the 2020 data going forward.
An all-site email with tables and screenshots was sent out last week detailing this information, if this has slipped through your inbox, please reach out to our help-desk and we will update your site with all relevant information.
The updated 2020 MDS is summarised in the table below:
The remainder 2020 deadline are summarised in the table below:
TIP: You can view your site's data completion for 2018, 2019 and 2020 through the Data Quality Assurance Report function on REDcap!
Database Changes to Look Out For
The Steering Committee has decided to implement the following changes on REDcap
1. Hospital/clinic visits & Home IV Ab events Form
Under Type of Clinic visit – additional data elements:
    - Telehealth (Patient home)                         - Telehealth (patient in clinic)                   - Telephone (verbal only)

2. Clinical Measures Form 
i) Added: Where was the clinical measurement captured?
 - In patient's home                                          - In clinic/hospital                                     - Unknown
ii) Added: Who Performed/recorded the measurement?
- The patient with their own equipment           - Clinician with their own equipment        -  Unknown

We really value your suggestions around ways to improve data collection within the registry.
ACFDR Research and Collaboration 
Joshua Herdiman is a Monash honours student who is being supervised by Dr. Rasa Ruseckaite on a patient reported outcome measures (PROMS) research project with patients with CF.
The report, titled: Patients and caregivers’ perceptions of informed consent and identifiable data, telehealth and quality of life in cystic fibrosis, focuses on patient and caregiver experiences and views on identifiable data in the ACFDR and remote healthcare. He has interviewed 15 patients and will start analysis soon.

ACFDR Annual Report
It was decided in the June Steering Committee meeting that Monash will delay the release of the 2019 Annual reports for another 1-2 months. This will ensure the registry has near-complete data for best analysis. We are still aiming to have the site reports out by the end of 2020.
Site Database Training
In light of ongoing lockdown restrictions, the Monash team will be providing virtual catch-ups and database training refreshers with sites over the next few months. Items to be covered include the Individual patient reporting tools, data export and the updated 2020 MDS.
Please let us know if there were any other topics or functions on REDcap you would like to be added.
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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