Survey on costs to families of raising and caring for children and adults with Fragile X syndrome

From FX Newsletter, June 2019.  This study is open until 31 July 2019

Research Study:  Costs to Families of Raising and Caring for Children and Adults with Fragile X syndrome

“The national FreeFX study, led by Associate Professor David Godler at the Murdoch Children’s Research Institute in Melbourne, aims to test a number of new highly accurate laboratory methods which can tell us about a person’s level of the FMR1 gene activity. We want to find out how early after birth these tests can be used to predict intellectual disabilities, behavioural problems and autism in children and adults who have expansions in the FMR1 gene.

A part of this study led by Dr Emma Baker also aims to estimate the costs to families and the Australian government associated with raising and caring for  children and adults with Fragile X syndrome at different ages.

These include costs of medical services, medications, education, housing modifications, accommodation and care assistance. In order to do this we collected questionnaire data from families who participated in the FreeFX study.

To better understand these costs, we are now asking families with a child or children with Fragile X syndrome to complete two short questionnaires.

These questionnaires ask about:

(1)      EQUIPMENT that has been purchased for the independence and safety of the individual with Fragile X syndrome:
SURVEY LINK:  https://redcap.mcri.edu.au/surveys/?s=LDRCFMKJKF

(2)       HOME MODIFICATIONS that have been made in order to make the family home more accessible and safe for the individual with Fragile X syndrome.
SURVEY LINK:  https://redcap.mcri.edu.au/surveys/?s=LDRCFMKJKF

The questionnaires also ask about funding and estimated costs of the equipment and modifications.

It is anticipated that each questionnaire will take 5-10 minutes of your time and all responses are anonymous.

This information will be beneficial for us to understand the costs associated with raising and caring for an individual with FXS, and the costs associated with
supporting families when the diagnosis is made early (eg, in infancy).

Ultimately, we hope this information will provide evidence that may be used to support introduction of newborn screening for Fragile X.

We thank you in advance for your time

Dr Emma Baker:   02 8341 6245 or emma.baker@mcri.edu.au”

 

 

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