ADCQR PARTICIPATION

To contribute to the ADCQR, your centre is required to register their interest by contacting the ADCQR Secretariat on [ADCQR email]. Your diabetes centre must nominate a local Principal Investigator (PI). The PI is responsible for site participation and compliance with ADCQR policies and procedures.

Getting Started

Once initial contact has been made, the ADCQR Secretariat will advise your centre on how to begin preparing for ADCQR data collection. ADCQR Central Management will help coordinate application submissions for local ethical and governance approval. ADCQR will provide all necessary resources to assist and train all relevant staff prior to data collection commencing.

There are three stages of setting up your diabetes centres as a site for ADCQR participation:

1. Engagement of relevant site staff, departments and administration
2. Human Research Ethics Committee (HREC) & local governance approvals
3. Training site staff

Requirements for Participation

To participate in ADCQR your diabetes centre must be able to meet the following criteria:

1. Ability to enter all eligible patients onto the database;
2.  Ability to nominate a PI to oversee and manage local data collection
3. Ability to establish and maintain internal systems for data accuracy and timely data entry;
4. Willingness to comply with the project protocol and HREC requirements;
5. Willingness to sign a ADCQR Collaborative/Data Sharing Agreement

DATA COLLECTION

Your diabetes team will collect routine clinical information on patients attending your centre over a specified sampling period of every year (4-8 weeks during the months of May/June). This sampling period may be extended up until the censorship date of 31 August upon agreement between your site and the ADCQR Central Management Team to accommodate for any delays in ethics and governance approvals, and/or reliant on your site’s capacity to collect more data.

The information collected is part of your patients’ routine care. Information collected will include patient’s name, address, date of birth, sex, basic information about health status (height, weight, blood pressure), diabetes management,

complications, test results and medications. Your team may also choose to collect patient-reported outcomes about self- management of health and lifestyle, quality of life and well-being. Identifiable information will be collected for the purpose of patient follow up through data linkage to information held by Australian Commonwealth and State and Territory Government agencies, as well as other clinical registries and pathology databases.

The censorship date (latest date for data submissions into the ADCQR) to allow for analysis, and annual pooled reporting and site reporting is 31 August of every year.

DATA SECURITY & STORAGE

Your centre will be assigned a unique code by the ADCQR Secretariat. When collecting patient data for this activity, your site will be required to assign and document unique patient codes to secure patient identity. These patient codes linking patient personal details are required to be stored securely onsite and with the ADCQR Coordinating Centre. They will be stored