News

Invitation to take part in important survey re TOF/OA and a 'lost twin'

Published: Thu, 31st January 2019, 12:16:00 PM

PLEASE COMPLETE OUR SURVEY

TOFS invites parents who have had children born with TOF/OA to take part in this preliminary survey to better understand the possible link between these conditions and a ‘lost twin’.  All mums are invited to take part, regardless of whether their TOF is still a baby, child, teenager or now a TOF Adult.

This excerpt is from from ‘The TOF Book' in the chapter written by Consultant Clinical Geneticist Charles Shaw-Smith: 'Data from one study showed that a child from a twin pregnancy is nearly three times more likely to have TOF/OA than a child from a singleton pregnancy…  It is possible that some cases of TOF/OA occur in one twin where the co-twin was lost at an earlier stage of pregnancy and may not have been appreciated either by the mother or the doctors looking after her.'

Just click on this link to take part in the survey.  It should take no more than a few minutes to complete. Both 'yes' and 'no' responses are equally valid and useful. Only one response per family please. In reporting the results, all responses and comments will be anonymised, and, if warranted, a more formal study may follow.

Many thanks.

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TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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