Questionnaires

1. Why fill in questionnaires?
2. Why on WaihonaPedia?
3. Fill in questionnaires
4. Print questionnaires
5. Save questionnaires
6. Send questionnaires
7. Frequently asked questions

Why fill in questionnaires?

• You learn about your child.
• You can print out an alert card with information about your child.
• You can send the questionnaires to your doctor prior to a visit.
• Doctors and researchers learn about your child's condition.

Why on WaihonaPedia?

• You don't have to fill in standard questions for every questionnaire: you fill them in once and WaihonaPedia shares this information with all your questionnaires.
• Filling it out is quite a bit of work because there are a lot of questions. The behavioural questionnaire, for example, consists of 10 parts. But you don't have to complete the questionnaires all at once. You can stop when it suits you and continue later.
• You are and remain the owner of the information and you decide if, when, with whom and how you share your information.

Fill in questionnaires

• Select the 'Personal' tab in the black bar: you now enter your Personal Dashboard.
• Go to the tab 'Questionnaires': you see that there are questionnaires ready for your son or daughter:
  • A questionnaire focused on your child's condition;
  • A behavioural questionnaire;
  • Possibly a questionnaire for a specific study to which you have been invited.
• Choose the questionnaire you want to fill in and click on the button 'to questionnaires...'.
• Click on the 'I participate' button. Before you can fill in questionnaires, you have to explicitly indicate that you want to participate.

Print questionnaires

When you have finished filling in, you can easily print out the questionnaires:

• Click the button 'Print questionnaires' at the bottom of the page: you will get a printable overview of the questionnaires.
• Select 'print' in your browser (the exact procedure depends on the operating system you are using: Apple (MacOS, IOS), Microsoft (Windows) or Google (ChromeOS, Android). If you don't know exactly how it works in the system you are using, check it in the help function).

Save questionnaires

You can also save the questionnaires in PDF format:

• Click on the button 'Print questionnaires' at the bottom of the page.
• Select 'print' in your browser and choose to save as PDF (the exact procedure depends on the operating system you are working with: Apple (MacOS, IOS), Microsoft (Windows) or Google (ChromeOS, Android). If you don't know exactly how it works in the system you are using, check it in the help function).

Send questionnaires

You are and remain the owner of the information and you decide if, when, with whom and how you share your information. That is why the completed questionnaires are not automatically sent to the researchers. Do you want to send the questionnaires?

• Click on the email link to 'the researchers' at the bottom of the questionnaires: your email programme will open a new email to the researchers.
• Add the PDF as an attachment.
• Send the mail.
  OR (use this method if you are working with WEBMAIL)
• Copy the email address of the researchers.
• Open your email programme and send an email to the researchers
• Add the PDF as an attachment.
• Send the mail.

Frequently asked questions about completing questionnaires

Why should I fill in the questionnaires?

• Other parents tell us that by filling in the questionnaires they have gained more insight into the development of their child.
• We are in the process of developing an Alarm Card containing your child's data. You can take this card with you on trips and holidays. The Alarm Card is filled with data from the questionnaire. For the development of this card we have received a financial contribution from the Ankie Hak Foundation.
• Before visiting the outpatient clinic of the expertise centre, you can fill in the questionnaires and send them to us (by e-mail or by post: ask your contact person at the clinic what your preference is).
  The doctor will then be able to read the information about your child in advance and, if necessary, ensure that additional specialists for one or more of your child's problems are available at the clinic. 

Does it take a lot of time to fill out the form?

Yes, it takes a lot of time to fill in all the questions. Usually 1.5 to 2 hours but that differs per person. But you don't have to fill in the questionnaires all at once. The answers are always saved. So you can stop and continue at a later time. In your personal dashboard you can see exactly how many questionnaires you have completed and how many more will follow.
PROTECTORIES ADDITIONS e.g. from Parent

Can I fill in the questionnaires more often?

Sure. For example, you can fill in the questionnaires every year and print them out and/or save them on your PC.
Note that currently you are provided with an empty questionairre each time you decide to fill it in for a next time.
To see your previous answers you need to print them or if you have a big screen you could show them side by side.

Where are the data of the questionnaires stored?

We store your answers on our WaihonaPedia servers. We make a backup each night. The servers are located in France, if you want ask us for more details. All people that are managing WaihonaPedia have signed a non-disclosure agreement that forbids them to look at your data or in any way make a copy of it. The only people that have access to your answers are yourself and the people you assign in circle 1 of your person with a disease (see your profile). We are, by contract with you, not allowed to distribute your answers to anybody!

What does WaihonaPedia do with the questionnaires?

WaihonaPedia doesn't do anything with the questionnaires because they're yours. You can print the questionnaires and/or save them as PDF and send them to your doctor, for example. Or to a researcher if you participate in a study. Your data on WaihonaPedia will never be used by doctors or researchers without your permission. That decision lies with you.