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Request Form
Frequently Asked QuestionsPreparing your applicationPlease complete the following online courses and email your certificates to cppresearch@cw.bc.ca. If you have done them within the last 2 years then you do not have to complete them again.
Your protocol should include your specific research question(s), rationale for your study, how you will define your cohort, your analysis plan and whether or not identifiable data is required for your project.
Yes. You will require an ethics application from UBC Research Ethics Board that covers what you plan to do with the data. You will need to provide us with this information and have approvals in place prior to receiving the data. It is a good idea to submit your online application to the data access committee as soon as possible, before submitting your application to the REB. This will help you avoid amendments to your REB application that the data access committee may require. Please contact the Data Steward who can help with your application and get you pre-approval for your project from the data access committee. The sooner you contact us the better. cppresearch@cw.bc.ca
We have over 3000 variables in our dataset! Check out the Data Registry and Tissue Bank pages for more information on what we collect.
At the moment, data is available to investigators, analysts and students at the University of British Columbia who are working with one of the EPPIC clinical investigators (Dr. Yong, Dr. Allaire, Dr. Williams, Dr. Bedaiwy). If you are not at UBC, please contact the Research Manager directly to discuss opportunities for collaboration. We hope to make our data available to external investigators in the future.
This will depend on the complexity of your project and how quickly you are able to do your part. Once approvals are in place with the REB and data access committee it will usually take 1 - 2 weeks to gain access to the data. The data steward will always get back to you within 1 week of receiving any communications.
We have a cost recovery model, meaning that we charge you for the time it takes to process your application and create your dataset. Let us know roughly what you need and we can give you a quote. For most UBC students and investigators doing unfunded research there is no fee at this time.
Approvals & building your datasetThis is the person who knows everything about the registry and tissue bank so feel free to contact them with any questions. They can also help you to pick the best data for your research question.
The data is maintained by the Endometriosis Pain Laboratory at UBC and the BC Women's Centre for Pelvic Pain and Endometriosis at BC Women's Hospital + Health Centre. Ownership of the data rests with the current principal investigator, Dr. Paul Yong.
The Data Access Committee was formed to review studies related to the Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry (EPPIC). The group will ensure careful consideration of staff resources, patient/participant exhaustion and benefit to the endometriosis community. This is a negotiation so we may ask you to make changes to your project to align with the above considerations. Members include endometriosis physicians, data management staff, trainees and patient partners.
This will depend on the complexity of your project and the quality of study documentation. The data access committee meets monthly and may request changes to your project, sometimes this also requires an amendment to your ethics application so it can take a few months. The research ethics board will have their own timelines depending on their capacity and the type of project you are proposing.
The approval process is to ensure we produce ethical, high quality research that benefits the endometriosis community and is within our capacity to support. We will always try to work with you.
After your study has been approved the data steward will meet with you to go over your application and ensure you are getting the best data to answer your research question and organize getting you the access you need.
Getting your dataThe data will be in a .sav file that can be opened with the Statistical Package for the Social Sciences. If you prefer to work in R, Stata, SAS or any other program you are welcome to convert it yourself.
The data must STAY on the remote server at all times, no exceptions unless approved by a Research Ethics Committee and the Data Access Committee. When your data is ready you will be given a link to a personal folder on the BC Children’s Research Institute (BCCHRI) network. We have access to a remote terminal with SPSS and R already installed. If you would like a program added please contact the BCCHRI Service Desk. You can also use VPN to access programs on your personal computer such as MAT Lab or Python. Please contact the BCCHRI Service Desk and the Data Steward to help show you how to do your analysis while maintaining security of the data.
Contact the BCCHRI Service Desk and put in a Support Portal ticket.
Yes and No. You can use any computer to access the remote terminal but you cannot keep copies of the data on your personal laptop. This is a violation of our UBC Research Ethics Board approvals and can lead to a privacy breach. Please contact the Data Steward if you have any concerns.
Maybe. We ask our participants if they want to know about future research opportunities. We are open to helping with recruitment if the results will directly benefit people with endometriosis and pelvic pain. You will need to get your project approved by the Data Access Committee and the Research Ethics Board so please ensure you have enough time for this step. Please contact cppresearch@cw.bc.ca if you are looking for assistance with recruitment strategy.
Yes, but you need to submit your project to the UBC Research Ethics Board. To speed things up please contact the Data Steward to get pre-approval. They can also help with your ethics application which will avoid the need for amendments.
You need approval from the UBC Research Ethics Board to link your data to EPPIC. To speed things up please contact the Data Steward to get pre-approval. They can also help with your ethics application which will avoid the need for amendments and help to develop an appropriate strategy.
We want to see your paper before it is submitted for publication so we can ensure you are interpreting the data accurately and responsibly. As this point we may also want to negotiate authorship if that has not already been agreed.
It is important to share research findings back to the people who let you use their data. Please send your plain language summary to cppresearch@cw.bc.ca so we can share your amazing work with participants on social media! A plain language summary should be short (1/2 page), focus on you findings, use active voice and highlight the impact of your work.
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