ACE IE registry design
Database/data-field synchronisation 2023/24/25
To aid in future collaborations, ieQ is promoting synchronisation of data-fields.
This initiative is for a generic endocarditis registry.
A For Q fever registry initiative, please see the respective QFIG page here.
The Draft ACE registry data-field is finally posted (PDF link in blue box below)
Exciting news! Opportunity to road-test the ACE IE registry
An invitation to anyone with an IE interest to road-test the ACE IE registry.
The first open meeting was held on Wednesday November 27th 5pm-7pm EST/QLD time to discuss this concept, with a follow-up meeting on December 11th 2024.
The next open meeting will be on Wednesday May 21st 2025 5pm-7pm QLD time
link below
Copy and paste into your browser to join the meeting.
All those who make a meaningful road-test/input in registry design will be acknowledged when project completed! The ACE IE registry is based on the ground-breaking Danish-Swedish NIDUS registry, but with additions for an Australasian mileu, and with the concept of 3 levels/tiers (non-CTS centres, CTS centres and voluntary).
Be part of history!!
A link to the dedicated datafields/registry page is below.
For non-CTS centres, test-drive red-fields (with lilac drop-down fields) ONLY
For CTS centres, test-drive the blue fields in addition to the red fields.
Meaningful input will be acknowledged on all presentations/publications of the development of this registry. Limited time offer!
Version 21 of datafields is below (Current/active version of data-fields)
ACE IE registry v21 Feb 2025 draft (PDF, 1.1 MB)
The registry was discussed at the ACE Endocarditis symposium.
See link to Symposium page below.
2024 ACE Transnational Hybrid Endocarditis Symposium
The historical development of this registry is below:
Following post-ponements due to COVID, this innovation is now recommencing.
Commencement is in several stages.
Stage 1 : posting of ICE and ieQ datafields on this page (July/August 2022)
he formal unveiling of the data-fields will be at the proposed Transnational Endocarditis Symposium.Stage 2: posting of sample research questions on this page (August/September 2022)
Stage 3: Virtual meetings to discuss proposed data-fields (September/October 2022)
Stage 4: Further discussion on data-fields by ACE Committee (October 2022- June 2024)
Stage 5: trial-run of proposed data-fields at selected sites (July-September 2024)
Stage 6: draft data-fields unveiled at trans-national endocarditis symposium October 12th 2024)
Stage 7: open meetings to further refine data-fields (October 2024 to July 2025)
Stage 8: final road-testing of data-fields
Stage 9 Unveiling datafields at CSANZ (August 2025)
Stage 10: Implementation/ Redcap preparation From late 2025.
Preamble.
The epidemiology of endocarditis is in evolution, (eg Rheumatic Heart Disease is being overtaken by cardiac instrumentations), and has regional variations. The pathogens responsible also have temporal and regional variations.
In addition to epidemiology, outcomes are also in evolution, due in part to improvements in investigations (eg PET-FDG), and due to changes in management protocols. Also, the role of MDTs and prompt involvement of subspecialty teams in outcomes has not been statistically analysed.
The Scandinavian registries and the now discontinued ICE registry are excellent examples of data being available to improve medical outcomes.
Endocarditis data is already being collected in many Australian centres, however every centre has relatively unique data-sites that may not be very suitable to pooling studies to answer specific questions. Single centre registries are limited in statistical interepretations, especially for uncommon pathogens or scenarios.
Current large registries also still do not answer some epidemiology and management questions, requiring specific data-fields.
Australia has the potential of having an endocarditis registry of similar power to the Scandinavian registries, with the added avantage of displaying epidemiology, management and outcomes specific to our populations , and with improvements in information technology in the future may possibly demonstate evolutions in real-time.
The first step to a national registry is a synchronised multi-centre registry.
ieQ aims to expedite this process through the steps displayed on this page.
Note, for the time-being, the aim is merely to synchronise data-fields. The harvesting of this data will be discussed at a later date to investigate the ethics/governance processes. The harvesting of data would be expected to be open to any contributors. Harvesting unlikely to be implemented until there are sufficient episodes available to render results statistically significant.
Stage 1: Posting of current IE datafields.
Here are posted the ICE and ieQ data-fields.
Progress: Stage 1 complete.
Due to the generous permission of the custodian of the ICE data-fields (discontinued several years ago),
Vivian Chu (thank you!), we are able to post it on this website to aid in the data-fields design process.
The ieQ Datafields are in modules by specialty, and are posted HERE .
- ieQ Admission Demographics Module (PDF, 120.3 KB)
- ieQ Clinical Module (PDF, 111.7 KB)
- ieQ Complications Module (PDF, 122.4 KB)
- ieQ Neuro Module (PDF, 83.2 KB)
- ieQ Micro Module (PDF, 151.3 KB)
- ieQ Pharma Module (PDF, 82.2 KB)
- ieQ Histopath Module (PDF, 40.2 KB)
- ieQ Echo Module (PDF, 82 KB)
- ieQ Imaging Module (PDF, 91.8 KB)
- ieQ Surgery Module (PDF, 131.9 KB)
Stage 2: posting of sample research questions on this page
As the datafields are being posted, we request those with an interest in the design of the synchronised fields to post (via the ieQ email: ieq@health.qld.gov.au ) questions about endocarditis they'd like these data-fields to potentially answer, with examples of the data-fields they'd like to answer those questions.
Sample: Can we better predict who will get RECURRENT (including but not limited to relapse) IE? Data-fields would include: Prior IE (date, organism, what if any surgery performed, antibiotic Rx, extent of disease- valve only, abscess, emboli), comorbidities (eg. dialysis, immunosuppression, diabetes).
These will be used to guide discussions at Stage 3.
Progress: advertisements commenced 22nd August.
Suggestions are posted HERE
Enterococcal IE: exact doses and creatinine clearance?
Beta-lactam TDM esp ceftriaxone.
Penicilin testing if known.
Generic IE: Adjunctive/combination therapy
Illness severity eg Pitt Bacteraemia score, Charlson co-morbidity
EURO Score (surgery)
Sternotomy Y/N for device extractions
Option for vegetectomy?
Redo aortic root revision Y/N
Surgery : emergent/urgent/elective time from diagnosis to surgery.
Imaging by modality to assess sens/spec
OPG
Addittional scores for calibration? eg DENOVA
Intra-op and post-op ECHOs (eg persisting abnormalities and assessment of surgical success/ repeat/relapse IE?)
MDT y/n and frequency of meetings
Diagnosis or treatment change at MDT
Stage 3: Virtual meetings nationally of interested members to discuss proposed data-fields
TUESDAY 11th October 2022 for initial endocarditis open forum to discuss data-field design for synchronisation.
This was a Zoom meeting to allow access without registration. This meeting composed of infectious diseases/microbiology (further open forums for other subsubspecialties to be announced shortly).
https://uqz.zoom.us/j/81963027074
This meeting discussed the Stage 2 questions/ proposed data-fields submitted, as part of the design of the synchronised data-fields.
The synchronised data-fields are also expected to be colour-coded with "essential" and "additional" fields.
All centres are expected to attempt to collate the essential fields (and discussions at the meeting with the aim of keeping the "essential fields" to a reasonable scale/difficulty), but "additional fields" are expected to be voluntary, depending on logistics etc in the contributing centres.
A committee representative of the major states was assembled to progress the public discussions. Further commitee members from subspecialties expected to be recruited shortly.
The final verdicts will not only include what the new "essential" and "additional" fields are, but also perhaps divide them into "5 year plans" for questions that may potentially have enough data to answer within 5 years (like the sample question above) and "long term plans" (for rare pathogens or circumstances that are unlikely be answered in such a short time-frame eg. Abiotrophia IE).
Stage 4: Further discussion on data-fields by ACE Committee (October 2022- September 2024)
We Thank the Danish Registry /NIDUS group (N atI onal D anish endocarditis stU dieS) for permission to view their (blank) data-fields, so that there may be a degree of synchronisation between the registries.
We also aspirationally hope to have a Redcap template completed during 2024.
We plan to unveil the completed data-firelds at the Trans-national endocarditis Symposium Saturday Oct 12th 2024.
Click here for further details.