Creating Growth Charts for CHARGE
Growth is a simple but important indicator of a child’s general health. Growth of children with CHARGE is recorded on growth charts designed for typical children. This is not ideal, since growth delay is part of CHARGE syndrome - these children may follow a specific growth curve. The growth of children with CHARGE syndrome can also be affected by clinical features associated with the syndrome, like heart defects. We aim to construct specific growth charts for children with CHARGE syndrome based on internationally derived data.
Who is eligible: anyone with definite CHARGE syndrome (is your information, including growth chart, in CSCDP?)
How the research will be conducted at conference
- Measurements of height, weight and head circumference will be taken
- Collection of previous measurements (bring growth chart with you to conference or upload into CSCDP database)
- Collection of information on various feaures of CHARGE (diagnostic features, growth hormone status, etc), through online CSCDP participation or questionnaire
Estimated time 10-15 minutes
For more information contact Monica T.Y. Wong at charge@umcg.nl
Why have you been given this information?
You, or your child, have been diagnosed with CHARGE syndrome. We would like to invite you (and your child) to take part in our research study. This form provides important information about the study. It describes the purpose of the study, and the risks and possible benefits of participating in the study. If there is anything in this form that you do not understand, please ask us or your own doctor.
What is the purpose of this study?
Growth is a simple but important indicator of a child’s general health and it is widely used in monitoring the medical care of children. Health care professionals, like pediatricians, use growth charts to monitor how children grow. There are specific growth charts available for boys and girls.
Why do we need specific growth charts for children with CHARGE syndrome?
Because poor growth is often part of CHARGE syndrome, it is not fair to compare the growth of children with CHARGE syndrome with that of typical children. Children with
CHARGE syndrome may follow a specific growth pattern under healthy conditions and good care but, at the moment, we have no specific growth charts for children with

CHARGE syndrome. The aim of this study is to construct such growth charts. We expect clinicians and parents to find these growth charts very useful in determining whether a child is growing sufficiently compared to what can be expected in a child with
CHARGE syndrome.
What do we need for this study?
To construct accurate growth charts for children with CHARGE syndrome, we need to collect as much data as possible on their growth, more specifically their height, weight and head circumference measurements. We already have data from the national
CHARGE outpatient clinic in the Netherlands, but we would like to expand this data set to include an international group of children. For this we collaborate with colleagues in other countries like the UK, US, Canada, Scandinavia, Germany, France and others.
What do you need to do if you decide to take part?
If you decide to take part in this study, we will ask you to provide information on some general CHARGE features and the growth measurements of either yourself or your child
(depending on who has CHARGE syndrome). Please send an e-mail to charge@umcg.nl to obtain the electronic questionnaire form. After completion, the form can be returned to us via e-mail.
As part of the standard medical-ethical protocol for studies on people, we also need you to sign the Informed Consent form that is included with this information (it will be at
Conference ). By signing this form you show that you understand what the study is for and agree to take part. You can also give us permission to ask for additional growth information from your local doctor or specialist.
How about using the CHARGE Syndrome Clinical Database Project for collecting information?
The CHARGE Syndrome Clinical Database Project (CSCDP) is an internet web-based questionnaire designed to collect extensive clinical data on individuals with CHARGE syndrome. Questions on growth are included in this online questionnaire. More information can be found via the CHARGE Syndrome Foundation website: www.chargesyndrome.org/CSCDP.asp
.
If you have already submitted (medical) information for you or your child to the CSCDP, then you do not need to fill in our own electronic questionnaire on growth. However, we would then like to ask your permission to have access to the CSCDP data. Please mention the CSCDP in the Informed Consent form .
If you have not yet submitted (medical) information for you or your child to the CSCDP, you can choose to submit information to the CSCDP instead of filling in our electronic questionnaire on growth. Please then mention the CSCDP in the If you have not yet submitted (medical) information for you or your child tothe CSCDP, you can choose to submit information to the CSCDP instead of filling in our electronic questionnaire on growth.Please then mention the CSCDP in the Informed Consent form so that we can have access to the CSCDP database.