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Next Stage

The Next Stage of the Study

What happens next?

When families are ready to take part in the next stage of the study, they are sent a study pack. This contains a consent form for them to complete indicating which parts of the study they are happy to take part in.

In particular, we are seeking permission to:
  • Access their child's hospital medical records and their GP and health visitor records. This will help us to get accurate information about each child's health.
  • Collect a blood sample from their child when they are having a routine blood test for thyroid function. This is a test which will usually be done when a child is around a year old and every year after that. If families agree to a sample being taken for the study at the same time, we send them a small tube to take to the clinic along with instructions about what to do.
The study pack will also contain:
  • A short questionnaire asking about each child's health. If families agree, we send them a similar questionnaire every year.
  • A pack containing buccal (mouth) swabs for each child and their parents. These swabs are like long cotton buds and are used to rub the inside of the mouth to collect cheek cells. From these cheek cells we can get DNA which we will be able to store for research. We will send you instructions about how to use these swabs. If families prefer we can arrange for a health professional to take these samples for them.

What do the families need to do when they wish to take part?

When a family is ready to take part in the next stage of the study, we ask them to let us know by completing a response card and posting it back to us. They will already have been sent the response card when they first took part. If this has been mislaid families can contact us using the ‘contact us’ section of the website, and we will send another out.

This can be done at any time after the birth of the baby and does not have to be completed immediately. When we receive the card, we will send the study pack described above out to the family.

If we have not heard from a family by the time their child is about 4 months old, we will contact them again to see whether or not they would like to take part in the study.

Families taking part in the Children with Down's Syndrome Study have access to a special member's forum. This is a safe place where families involved in the Children with Down’s Syndrome Study can leave messages for one another, post photographs, and share their experiences of having a young child with Down's syndrome. Access requires a secure password & login. If you are taking part in the study, and would like to join the forum, then please email cdss@egu.york.ac.uk and request a password & login.

Click here to go to the member's forum.

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