The purpose of PEDIGREE is to progress the cancer control objectives of The Cancer Council Victoria and University of Melbourne by developing and maintaining high quality resources for epidemiological research. PEDIGREE has a significant asset in the data and biospecimen information it has collected through its extensive research studies. The data and biospecimens are available to researchers on a cost recovery basis. Prices and availability will be confirmed via an application of an Expression of Interest.
Requests to collaborate on projects using data or biospecimens from PEDIGREE are assessed by the PEDIGREE Executive Committee.
Step 1: Form a research idea that could utilise PEDIGREE resources
Decide on a lead investigator
Nominate other investigators
The investigators listed in the Expression of Interest (it should be a fairly short list) constitute the default writing group for all the publications emanating from the proposed project. For any individual papers, you could consider inviting additional investigators to that paper’s writing group – for instance, if they have subject matter expertise relevant to the paper’s topic.
Write a project synopsis
The synopsis should include:
- Aims and hypotheses
- Research plan
- Rationale for resource use
- Requirements for project
- A provisional timeline
Submit an Expression of Interest (EoI) when you have a research question and a general methodology. One purpose of an EoI is to avoid duplicating research efforts. Another is to inform people who might wish to join the project. EoIs from external researchers give the PEDIGREE committee a chance to evaluate the research and their participation in it.
The committee will review the EoI and will either:
- Approve the project
- Ask for revisions and a resubmission
- Reject the proposal (rare)
The review normally takes up to two weeks.
Step 4: Draft an analysis plan
The analysis plan for the project should include, at a minimum: aims, inclusion criteria, outcomes and exposure variables of interest, statistical methods, covariates and rationale for their inclusion, any sensitivity analyses and tentative timeline.
Step 5: Circulate analysis plan to the writing group for feedback and approval.
Include PEDIGREE coordinator ( PEDIGREE@cancervic.org.au) in all correspondence.
Step 6: Organise/verify Materials Transfer Agreement (MTA)
Unless your institution has an existing relevant Data Transfer / Materials Transfer Agreement, contact PEDIGREE@cancervic.org.au to organise one.
If you did not have HREC approval when submitting your EoI, make sure you provide PEDIGREE with it now.
Step 7: Submit a data request
Fill out the PEDIGREE data request form (.docx) and send to PEDIGREE@cancervic.org.au.
At this point you will need to hold a finalised ethics approval, and an MTA.
Data request processing times can range from a week to over a month, depending on urgency, request complexity and available resources.
Data received from PEDIGREE
Step 8: Perform the data analysis
Step 9: Draft a paper outline, including tables & other outputs. Share results on an ongoing basis with all candidate authors to enable them to contribute meaningfully as co-authors
The committee may suggest additional authors
Step 11: Circulate the FINAL DRAFT.
Ask all authors to check their affiliations and acknowledgement texts.
Step 12: SUBMIT your paper to the journal
If your project extends beyond one paper, re-start the process from step 4.
Please remember to keep PEDIGREE and your co-investigators informed as to the status and progress of the publication/s
- Respect other authors – treat them as you would want to be treated yourself
- Involve all authors at every step
- Give authors adequate time to give feedback on drafts
- Distribute final draft to all authors prior to submission and gain their approval to submit
- Share reviews with all authors
- Distribute revised draft(s) to all authors for feedback and gain their approval to resubmit
Health 2020 or the Prostate Cancer Program
To access resources from the Cancer Council Victoria-based research programs Health 2020 or Prostate Cancer, please complete an Expression of Interest and email to the PEDIGREE Co-ordinator. Once this has been approved please send the Data Request form to the PEDIGREE Co-ordinator.
Biospecimen and Data Access Policy
Expression of Interest
Data Request Form
Progress Report Form
ABCFR and ACCFR
To access the University of Melbourne-based resources, the Australian Breast Cancer Family Registry (ABCFR) or Australasian Colorectal Cancer Family Register (ACCFR), please contact the PEDIGREE Co-ordinator for details.