WARNING - THIS IS THE TEST VERSION OF RUDYSTUDY, ONLY FOR USE BY INVITED PARTICIPANTS FOR TESTING PURPOSES
For the actual site visit: rudystudy.org

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What will I have to do?

What will I have to do?

By participating in the RUDY Health Study, you will be helping to advance the understanding of rare conditions.

Before anybody can take part in medical research they need to give their informed consent. We ask you to carefully read our information sheet, and then register on the website.

The RUDY Study is open to those with rare disorders, as well as their blood relatives and partners. If you are under 16, you are welcome to register yourself on the RUDY website, but we will need to talk to your parents and get their consent before you can take part fully.

1
Go to the homepage and click 'Sign up today'
2
Register your details. If you are registering on behalf of your child, we will ask you to record first their details and then yours also.
3
On the second registration page please select your diagnosis from the drop down lists available or enter it in the ‘Other Diagnosis’ box if it is not listed.
4
On the third registration page we will ask you if you have read the information sheet and if you have any questions at all.
5
If you have questions, we will ask you to select some upcoming times for a telephone appointment to discuss the RUDY Study with a member of our team.
6
If you don’t have any questions, we will ask you to provide your written consent via the website. If there is anything on the consent form you are unsure about, you can always go to Step 5