The UK Acromegaly Registry: Working Together for Better Care Survey

Welcome to the UK Acromegaly Register (UKAR) Survey!

The UK Acromegaly Register (UKAR) started in 1997. The register is a list of people with acromegaly and gigantism. Its purpose is to collect information about these conditions. It has helped us learn more about acromegaly and gigantism. It has also helped us learn about the treatments used for these conditions. Currently, it's not active. The UKAR steering group is a team of people who are patients, doctors and a UK Society for Endocrinology member. They want to know if it is a good idea to reopen the registry.

Can you help by answering some questions? Your answers will guide our next steps with the UKAR. Please select the choice that best describes you. It might take 10-15 minutes.

Your help is important, but it's okay if you don't want to answer. It won’t affect your care in any way.

1.Please select the answer that fits best for you.

Have you heard of the UKAR before?

Yes - please say how

Not sure

Comments

2.Is it a good idea to open the UKAR to collect new information?

Yes

Not sure

3.What should we put on the UK Acromegaly Register? (Select all that are important to you)

Information about yourself, like age, sex, gender, ethnicity (where you come from), your job

Your medical history

Treatments you’ve had for your acromegaly and other medical problems

How well the treatments worked

How acromegaly/gigantism has made you feel and the effects on your life

Something else – please say

4.Is there anything you don't think we should ask?

Yes - please say what

Comments

5.How would you like to receive updates about the register?

Online (for example via e-mail updates or a website)

By mail (a letter through the post)

Through your doctor at the hospital or your GP

Via a phone app

Other – please tell us!

6.Would you like to use a phone app to help the UKAR?

Yes

Not sure

7.How often should we update your information?

Something else – please let us know

8.What do you want the UKAR to do?

Conduct more research about acromegaly and gigantism

Help you find treatments to try

Help you talk to your doctors better

Something else – please say

9.Would you think about joining an online meeting in 2024 to learn about the UKAR?

Yes - please provide your email and name in the box below

If yes - please enter your details

10.Do you have any questions or ideas about the UKAR?

Thank you for being part of the UKAR survey!