If you have pancreatic cancer in Aotearoa New Zealand, you can help move research forward.

A simple poo sample + two short questionnaires will help researchers improve early detection of pancreatic exocrine insufficiency (PEI).

Register your interest

What’s Involved

There will be two questionnaires which we will send to you two weeks apart. The questions will be about your digestion-related symptoms and any treatment you may be having for this as well.

We will also be asking for you to provide a stool, or poo sample so we can test how well your pancreas is functioning.  We will provide you with all the things you need to do this, and it can be dropped off at your local lab or collection centre.

Your Contribution

  1. Completing online questionnaire #1 (emailed to you at the start) This will take 10 to 15 minutes to complete. The questions are select and click (multiple-choice).
  2. Providing a poo sample and dropping it off at your nearest collection centre (we’ll provide you the materials and information to help you do this)
  3. Completing online questionnaire #2 (emailed to you at the end, about two weeks after questionnaire #1). This will also take 10 to 15 minutes to complete.

The total time commitment for you will be one to two hours in total, spread over two weeks.

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Participating in the study is completely voluntary.  It is your choice whether or not you’d like to participate.  There are no physical risks to taking part in our study as we are not asking you to try a new medicine or treatment.

Who can take part?

You can take part in this study if you have a diagnosis of pancreatic cancer and you currently live in Aotearoa New Zealand.

Later this year, this study will open to residents of Australia.

ELIGIBILITY DETAILS

You are eligible to take part if:

  • You currently have pancreatic cancer, OR
  • It has been less than 2 years since you’ve had surgery for pancreatic cancer.
  • You currently live in Aotearoa New Zealand.

What does participation look like?

1:
EOI Form ⟹

You complete an expression of interest form.

2:
Phone call ⟹

You are called by our study coordinator, who explains the study and what your contribution would be, and confirms your eligibility.

3:
Resource Pack ⟹

If you decide to participate, you are mailed a resource pack that includes instructions and a specimen cup for poo collection.

4:
Questionnaire Link #1 ⟹

You’ll also be emailed a link to complete the first of two online questionnaires. Your consent to participate is the first question of this questionnaire. However, you can choose to stop participating in the study at any time.

5:
Poo sample & dropoff ⟹

You collect your poo sample using the instructions and the specimen cup provided. Drop it off at your nearest collection centre within 24 hours.

6:
Questionnaire Link #2 ⟹

You’ll be emailed a second link to complete the second (and last) of the two online questionnaires. 

Well done! You’ll have earned a $25 gift card koha AND helped move pancreatic cancer research forward!

Frequently Asked Questions

Can I change my mind?

Absolutely – participants can withdraw from the study at any time before or during participation. If you stop participating, it will not impact your medical treatment or initiate other consequences. Data collected up to the time of withdrawal will be destroyed, and no new data will be collected.

Can a friend or family member help me?

Yes, a support person and/or someone from your whānau can be present during the discussion and consent process. A phone call or a video call can be set up at a time your support person is available. Also, we understand that you may want to talk about the study with your family or a friend and you are more than welcome to do this before deciding whether or not to participate.

How do I get my poo sample to the lab?

We can help you identify the nearest collection centre. Ideally, you or a support person delivers this sample to the collection centre yourselves. If this is not possible (or you are in a rural location with no collection centres nearby), we can work with you to explore delivery options.

Will I receive anything at the end?

Yes, all participants will receive a $25 gift card koha (as well as our deepest thanks for contributing to this important research).

Who is running this study, and why?

This study is run by ASPERT, a non-profit research group based at the University of Otago (Christchurch campus), with team members worldwide. The lead investigator is Dr. Amanda Landers. This study is funded by a grant from the Canterbury Medical Research Foundation.

Around the world, pancreatic problems in people with pancreatic failure are potentially not being diagnosed, and there is no quick test. We are testing a new, simple set of diagnostic questions (co-designed with people who have pancreatic problems) which health professionals can hopefully use to diagnose pancreatic problems faster, start treatment sooner, and improve care.

Find the ASPERT Research Network on Facebook here.

Is my data kept private?

All data pertaining to study participants will be treated with strict confidence. Data that could be used to identify a participant will not be available to anyone not within the immediate research team. Participants will be allocated with a study number so that no participant will be able to be identified, outside the immediate research team. Personal and health information is a taonga (treasure) and will be treated accordingly.

What happens to the sample I have donated?

The poo sample will be destroyed in the usual way by the laboratory. They are not stored and no further tests will be done in the future. You have the option to request a karakia when your sample is destroyed.

What are the possible risks of this study?

While there are no physical risks to taking part in our study, as we are not asking you to try a new medicine or treatment, we will be asking you some questions about your quality of life. You could be feeling anxious or sad about your diagnosis, and answering questions about your symptoms may be emotionally challenging.  If you indicate this to us we will contact you to see how we can help.

Can I have an interpreter present?

If you would like to have an interpreter present, we can arrange this. However, our online survey is only available in English, so someone who can read and write English needs to help you complete it.

Can I use paper forms, instead of digital forms?

Yes, if you would prefer to fill out the two questionnaires on paper, instead of online, we are happy to mail you paper forms and include return, self-addressed envelopes.

Any other questions?

Please email us at: ASPERT_toolstudy@otago.ac.nz