Research collaboration

Before application for ethics committee approval

Letter of support for Ethics application

It is essential that the researcher contact the QCPR manager to negotiate the recruitment method to be used before the application for Human Research Ethics Committee (HREC) clearance is submitted. The Cerebral Palsy League (CPL) HREC will not consider an application that involves recruitment through the QCPR without a letter of support from the QCPR.

Researchers should expect to provide a one-page summary of the project to the QCPR manager for consideration by the steering committee. This summary should include the negotiated recruitment method/s (see recruitment and selected recipients below) to be used by the QCPR as well as any information that can assist the steering committee in determining whether this project is an appropriate use of the data held on the register.  Specifically, it should include a one or two paragraph summary of the project, similar to the summary in an ethics application. It should detail what participants will be told, what they will be expected to do, what will happen to their information and what outcomes are expected from their participation.

This is not a general ethics review but the steering committee will decide whether the project and the use of the data falls within the expectations of those people who have provided the information to be register.

Time frame

Applications can be considered out of session or if deemed necessary by the committee members, an application may need to be tabled at a meeting. Out of session applications will take at least a week to be considered and up to a week for return correspondence. The committee meets every second month so if it is not possible to achieve a decision out of session, applications should not take longer than two months and one week to be considered.

Items to be included in your ethics submission

Named site

The QCPR should be named as a separate site on your application.

Our address should be:
Queensland Cerebral Palsy Register
P.O. Box 386
Fortitude Valley, QLD    4006


Your application should state that you intend to recruit through the QCPR in addition to the other recruitment methods you intend to use. The routine recruitment method used by the QCPR is a database query on the inclusion criteria for the study and the production of a cover letter individually addressed to participant families. These cover letters will be posted directly to the families in a letter that includes your information about the study. This method is called using the register as a recruitment frame.

If a second contact (by post or personal contact by QCPR staff) might be necessary, it must be approved by the ethics committee prior to any action. If you know this will be required or think it is likely, we highly recommend including it in the original ethics application.

It is possible to negotiate a non-routine method of recruitment by contacting Michael deLacy, Manager QCPR, however under no circumstances will the contact details of potential participants be provided to researchers or anyone outside the QCPR staff. Any negotiated method or recruitment must be approved by an HREC so this must be negotiated and included in the submission.

Inclusion criteria

Letters will be sent to people on the register who meet the inclusion criteria outlined in the Ethics Application. This letter will come from the QCPR and include the information about the study. It is important that the QCPR does not send letters to people who will not be allowed into the study. As a result, the inclusion criteria in the Ethics Application must be clear, comprehensive and correct.

Selected recipients

It is possible to make a list of QCPR registrants who i) meet the inclusion criteria and ii) do not exist on another list (such as a list of people already recruited into the study) and only send recruitment offers to the new list of registrants. There are specific requirements that must be met if this is to be available so it must be included in the ethics submission. As an example, is it is cheaper and better to send a second letter only to registrants who have not already been recruited previously. If this is required, contact the QCPR manager prior to ethics submission for an explanation of the process. The following text should be included in your ethics submission relating to QCPR recruitment; “Registrants selected to receive (all/second and subsequent/other) offers of inclusion into the study will be identified using the routine QCPR method to screen out those previously recruited”.

Acknowledging the QCPR

As a condition of assistance with recruitment for a project, the Queensland Cerebral Palsy Register (QCPR) requires acknowledgment in any publications arising out of the project. As a general rule, we would prefer not to include any names however, if you feel it necessary to do so, it can be included as shown in parentheses at the end of the suggested text below.

Suggested text for acknowledging the QCPR is as follows.

We “would like to acknowledge the collaboration of the Queensland Cerebral Palsy Register(; Michael deLacy)”.

You may change the text slightly to fit with surrounding text as long as the intent is clearly the same. If this text or something very similar is not suitable, please agree with the register on other text prior to publication to avoid any embarrassment or breach of our agreement.


The QCPR reserves the right to charge a cost recovery fee for any work provided to a research project however one of the four aims of the QCPR is to support research. As a result the register was set up to make recruitment efficient which means labour costs for simple, routine recruitment can often be small. If selection criteria are simple and directly searchable on our database the labour costs of developing the list and cover letter might be waived. Each project will be considered individually however in all cases the letters will be posted by QCPR staff and the actual costs of postage will be charged to the project. The QCPR will do its best to keep the work efficient and the cost as low as possible.

Investigator status

It is not necessary for the QCPR to have any investigator status on your project if you only want to use the QCPR as a recruitment frame.

If you want a different involvement from the QCPR then individual negotiation with Manager QCPR will determine any additional expectations.

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