Frequently asked questions about completing questionnaires

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.