Data Access Request Process

Complete the mandatory training courses

Write a research protocol
Determine if you need a new ethics application

Download the EPPIC Codebook

Complete the online application

Reviewed by the Data Owner or the Data Access Committee

The Data Steward will contact you to discuss the variables in your dataset

Once we have decided on the best data for your project we will build your custom dataset

Done by the requestor

Please send us manuscript drafts for review and a plain language summary for participants

 

Application Form

 

Frequently Asked Questions

Preparing your application

Please 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.

If your project falls under the current research ethics approval for the registry you will also need to read the registry ethics application.  This can be given to you by the Data Steward.

Your protocol should include your specific research question(s), rationale for your study, your inclusion/exclusion criteria, and your analysis plan.

Maybe.  If your project uses only EPPIC data for the purpose of studying pelvic pain or endometriosis and you are a UBC student with one of the study investigators then no, you do not need a new ethics application.

If you need to collect additional data, want to link EPPIC data to another dataset or are not a UBC student or investigator then you will need a new ethics application.

Please contact the Data Steward who can help with your application and get you pre-approval for your project.  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.

You’ll need to study the codebook and request only the data you need for your project.  You will not get all the data, just what you need to answer your research question.

Download the codebooks

At the moment, data is available to investigators 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.

cppresearch@cw.bc.ca

This will depend on your project and how quickly you are able to do your part. Most people find it takes 4 weeks - 3 months to get their data.

The data steward will always get back to you within 1 week of receiving any communications.  Once everything is approved it usually takes 1 – 2 weeks to build your dataset.

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.

Approvals & building your dataset

This is the person who creates your dataset.  They know everything about the registry and tissue bank so feel free to contact them with any questions.

They will also help you to pick the best data for your research question.

cppresearch@cw.bc.ca

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.

If all you need is approval from the data owner this can usually happen within a few days of submitting your application.

If you need approval from the committee, they meet 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 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 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.

You will NOT get all the data, just what you need to answer your question.

Once agreed the data steward will build your custom dataset.

This usually takes 1 - 2 weeks.

Getting your data

The 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.

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 a secure 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 you do your analysis while maintaining security of the data.

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 also send out a quarterly newsletter.  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 so please ensure you have enough time for this step.

Please contact cppresearch@cw.bc.ca if you are looking for assistance with recruitment.

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.

cppresearch@cw.bc.ca

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.

cppresearch@cw.bc.ca

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 in our newsletter and 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.