ADPKD Research Priority Setting Partnership Questionnaire
Questions marked with a
We are glad there is more research starting to happen in ADPKD - Autosomal Dominant Polycystic Kidney Disease.
We now need your help to identify the top research priorities to find new treatments and improve care.
We want you to read the list of research questions below and pick the ones that are most important to
. It doesn't matter if you are a patient directly affected by ADPKD, a family member or carer, or healthcare professional. We just want to know what
think is important to research.
The questions have been identified through consensus and with input from patients, carers, doctors, nurses and other professionals. An independent expert has checked the questions to make sure they haven't already been answered by research.
After we've analysed the results, we'll hold a workshop in Spring 2020 where we'll discuss the priorities and agree the final Top Ten. We will then publish these priorities widely and encourage researchers to focus their efforts on them.
The questionnaire is anonymous. We include some questions about you so that we can see the differences between research that's important to patients compared with family members or doctors/nurses. These questions won't identify you personally. We keep the data securely for 3 years and then destroy all records.
At the end, there is an optional email link. If you'd like to attend the workshop, just send us a message via the link with your contact details.
Email Tess Harris at the PKD Charity:
. Or ring the helpline on 0300 111 1234 (Mon-Fri, 9.30 to 5pm) or the office 020 7387 0543. Leave a message if no-one answers and we'll ring back as soon as possible.To find out more about the ADPKD PSP process,
please visit the PKD Charity website page
Ready to begin?
It should take about 10 minutes. Thanks very much!
First, are you?
A person diagnosed with ADPKD
A family member or carer of one or more people with ADPKD
Healthcare professional interested in ADPKD
Interested in but unaffected by ADPKD
Other - please say
Save & Continue Later
Continue Without Answering