This stage of the urinary kryptopyrrole (UKP) study is an observational study based on clinicians' use of UKP testing. This is stage 4 of a larger program of research, which you may read about here.
What does it mean to participate?
As a clinician, participating in this research requires you to identify suitable patients to enrol in the study. During the study you will practice as usual, the only difference is that you will administer the DASS-21 questionnare to participants, and will provide case data to us for analysis. Your patients will be able to access pyrrole testing at a reduced rate of $35 per test (not including collection fee).
Who can be a participant?
Anyone who you would usually use UKP testing with, is over 18 years old, and is not pregnant or breastfeeding.
How do I sign up?
Please contact Jason Rainforest (contact details at the end of this page) by email or phone for more information.
Should you wish to participate, there is a training webinar available for clinicans. Please follow this link to view the recording of the webinar: https://youtu.be/RoYJ7gWSnic.
Other commonly asked questions
Q. What is the cost to the patient for pyrrole testing in this study?
A. Patients enrolled in the study are offered the test for $35. This does not include collection fee imposed by the collection centre, and may vary.
Q. Can I enrol existing patients?
A. Yes, you are able to enrol existing patients. We cannot collect data retrospectively though, all data provided to us must be new data, and after the patient has consented to being part of the study.
Q. Is there a limit to how many patients I can enrol in the study?
A. We are recruiting up to 500 patients in total from all clinicians. When we are close to this number we will notify everyone that we are near the maximum.
Q. Do I have to do follow-up pyrrole tests?
A. At least one follow-up pyrrole test per patient would be valuable from a data-analysis point of view, however this is not strictly necessary. Each individual patient may have up to 3 follow-up pyrrole tests if necessary. With each pyrrole test, please administer the DASS-21 questionnaire as this is being directly correlated with the pyrrole level.
Q. What if my patient doesn’t have elevated pyrroles, do I still include their data in the study?
A. Yes. If your patient’s pyrrole test result comes back low (suggesting no pyroluria), then please complete the case report form as usual. It is valuable data that we will be analysing to get a better picture of what the pyrrole level means to us as clinicians.
Q. I am running low on participant forms, how do I get more?
A. You may contact us for more forms, and we will send you another printed pack. Alternatively, you may email us to request download links for printing your own copies.
Ph: +61 7 3253 9335
Dr Janet Schloss
Ph: +61 7 3253 9579