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Supporting families affected by DiGeorge Syndrome, VCFS and 22q11.2 deletion

GOS- Parent/Carer Experience Forum

GOS mental health studyThis forum is part of a national study focussing on the mental health needs of children and young people with 22q11DS. The aim of the study is to improve the information and access to care and support available to children and young people with 22q11DS. We are really keen to hear your views so that we can try to improve services for other children and young people in the future.

The research team are based at Great Ormond Street Hospital with collaborators at the Maudsley Hospital. Max Appeal is helping to run this part of the study.

Invitation to Join the Parent/Carer Experience Forum -NOW CLOSED!!!!

We would like to find out about the needs and experiences of children and young people born between 1990 and 2004 and their families regarding mental health and developmental difficulties from the perspective of parents and carers.

We need your help to do this. We want to know about the services you have received, how you have found these services, any barriers to accessing services, and what you have found helpful.

How will the Forum work?

The discussion forum is a closed group so only Max Appeal will be able to identify you from your posts. Max Appeal will be responsible for running the discussion forum and will remove all names from forum posts before sharing this information. The research team will not have any personal information about you other than the information you give when you sign up to the discussion (age, sex, location and so on).

Max Appeal will ask one question/discussion topic a week for 10 weeks and you will be invited to inform us of your opinions and discuss this topic with the other people on the Forum.

How do I join the forum?

please contact Max Appeal on 0300 999 2211 or email info@maxappeal.org.uk or click on the Contact Us link below.

If you would like to find out more about the study you can follow the link below or contact the study team by emailing Neus Abrines-Jaume Neus.Abrines-Jaume@gosh.nhs.uk

We will need to know a little bit about you and the person with 22q before you join the forum, such as age, gender, relationship to the person with 22q and a little about that person.

Once Max Appeal has received your details, you will be sent a unique and non identifiable 'username' along with a 'password' to join the private forum.

Please see the documents below for the detail!



Contact Us Right Arrow

Source: maxappeal.org.uk/research/gos-_parent~carer_experience_forum

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