Questionnaires

The questionnaires are a formal way of collecting common information. The data is then stored in our population-based database. This data is further used for research purposes. A large participation worldwide is required in order for the data become statistically significant.

Please read the terms and conditions regarding the privacy policy and data protection.

We have divided the questionnaires into small portions so that you should not be facing any browser, download and server issues. Also, this way you do not have to complete all the information at one go. We have provided the questionnaires in PDF formats which can be downloaded and viewed. We would like to encourage you to view the questionnaires before starting the online forms. Data correctness is of utmost importance to us.

The online questionnaires can only be completed if you are logged onto the site. You will see the links on the left hand side under your username if you are logged in.

A questionnaire can be submitted only once and cannot be retrieved by you or any other registered user. To protect your information we are storing all the submissions on an offline server.
Watch this space for further questionnaires. We will announce them on this website, through email and/or through your local charities.

We would strongly recommend you to:

  • Download the documents
  • View the questions and see if you have the answers
  • Try to find the answers if you don’t know them immediately
  • Go to online forms, complete the questionnaires and submit them

If you have questions or need assistance for completing the questionnaires please do not hesitate to contact us.

GLOSSARY of terms used in the questionnaires:

SUBJECT CHILD refers to the child who has been diagnosed with cancer.

REFERENCE TIME refers to the time between the birth and the cancer diagnosis time of the child.

VIEW QUESTIONNAIRES:

Child-General

Child-Family-History

Child-Health-History

Child-Residential-History

Child-Lifestyle

Child-Diet (0-24 months)

Father-General

Mother-General

Mother-Pregnancy-Diet

Mother-Pregnancy-Lifestyle

The questionnaires above are in PDF () format which requires Acrobat Reader installed on our computer. You can install the Acrobat Reader free by downloading from Adobe website

WHY?

Why in my brain?
It caused me so much pain.
Why in my head?
Perhaps somewhere else instead.
Why in my brain?
We tried a fluid drain.

I just want to walk like you.
I’ve had enough now, haven’t you too?

Poem from Sophie Pollock who lost her battle with cancer in 2007.

Things you can do on Difficult Days

Talk about the child who has died.
Write a letter to him/her.
Eat his/her favourite food.
Watch a video of him/her.
Wear one of his/her clothes like a scarf.
Light a candle.
Look at photos.
Listen to his/her favourite music.
Visit the grave.
Cry, laugh, scream.
Release a balloon with a message.

Some tips for parents and siblings.

What’s the Point?

What’s the point of eyes,
If you’re not here to see?
What’s the point of ears,
If you cannot hear me?
Every sense on my body,
Useless as a broken toy,
What’s the point of beauty,
If you cannot enjoy?

Cry of a parent - by JK.