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.

details below

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

https://teams.microsoft.com/l/meetup-join/19%3ameeting_OWVkMWNhMTQtMzU3MS00NjRkLWIyZmMtMzBlNTc4NWNiNDRi%40thread.v2/0?context=%7b%22Tid%22%3a%220b65b008-95d7-4abc-bafc-3ffc20c039c0%22%2c%22Oid%22%3a%22ea352b14-52ce-4564-b4d6-85d21ceefbe6%22%7d

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 ld only be requested to fill in data for partients NOT transferred to CTS centres (CTS centres will fill in RED and BLUE fields).

Request for

For CTS centres, test-drive the blue fields in addition to the red fields.

Please road-test prior to May meeting and forward comments!

Meaningful input will be acknowledged on all presentations/publications of the development of this registry. Limited time offer!

Version 22 of datafields is below (Current/active version of data-fields)

ACE IE registry v22 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.

ICE CRF (PDF, 194.1 KB)

The ieQ Datafields are in modules by specialty, and are posted HERE .

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.

2019 synchronisation meeting for reference

Record of inaugural endocarditis data-field synchronisation meeting from 2019 for reference.

Not for use in 2022

The first tele-meeting was held on December 12th, 2019 0900 (QLD), 10.00 (NSW/Vic/Tas), 0930 (SA) for 1 hour.

Thank you to all who participated! Participants from every state overwhelmed expectations!

Summary of discussions were to have a single tier of data colection as a minimum.

The composition of this for further discussion be likely to be at least the current ICE collection field, plus follw-up to 12 months (as 1 year follow-up current ESC management guidelines) plus whether patient had formal ID involvement or MDT involvement. Other suggestions still most welcome!

A data collection pro-forma will be posted here once there is agreement on the fields to be collected.

The other consensus reached that day was that this synchronisation should be basis of a goal to aim for a national IE registry.

ieQ will look into possible approaches to this other the coming months.

Correspomdence in the interim will be by email (see below) with date for 2nd tele-meet to be announced soon.

Suggestions prior welcome via ieq@health.qld.gov.au

For reference, the pre-discussion page is below.

This section below will be deleted at end of January 2020.

Buttons here for data-field wishlist and CTS spreadsheet (not currently active in 2022)

Wishlist (DOCX, 21.4 KB) Surgical (XLSX, 20.2 KB)

Preliminary plans are perhaps 3 tiers of data-fields (aka AGAR) with starting tier being what a single researcher can gather/collate, a middle tier requiring 2 researchers (1 being able to interpret echo films as reports not always accurate), and a 3^rd tier (MDT tier) requiring several researchers (from different specialties) to gather data pertinent to their own specialties. This however is subject to change, dependant on discussion.

Discussions are mainly to ascertain the MINIMUM data fields required to gather meaningful multi-centre information on endocarditis, in an effort to find ways to reduce it’s significant mortality (which has barely budged in 3 decades). Once the fields are agreed on, sites agreeing to collate this info will be named on the ieQ website (with the tier level they are happy to do) to aid future collaborations. This is NOT a call to actually share the data, merely to synchronise our collections (and identify who is collecting) to aid researchers in (the near) future with formulating collaborative studies to hopefully rapidly reach statistical significance.

Through these collaborations, Australia has the potential to rapidly identify and respond to emergent patterns of IE (perhaps even the question of whether pursuing riskier surgery improves overall outcomes?) Australian data may lead to modifying IE protocols!

2019 dial-in information below. (note, 2022 details likely to be different and will be posted soon).

Join from PC, Mac, Linux, iOS or Android: https://uqz.zoom.us/j/651338321

Or iPhone one-tap (Australia Toll): +61280152088,651338321#

Or Telephone:

Dial: +61 2 8015 2088

Meeting ID: 651 338 321

International numbers available: https://zoom.us/u/abPI4xyRJ2

Or a H.323/SIP room system:

Dial: SIP:7588@aarnet.edu.au

or H323:651338321@182.255.112.21 (From Cisco)

or H323:182.255.112.21##651338321 (From Huawei, LifeSize, Polycom)

or 162.255.37.11 or 162.255.36.11 (U.S.)

Meeting ID: 651338321

Or Skype for Business (Lync):

SIP:651338321@lync.zoom.us

ALSO voice-link only (handy if bandwidth for video is exceeded)

Teleconference:

Dial in: 07 3117 0430

Conference Passcode: 436414#