The GenROC (Genetic Rare conditions Observational Cohort) study has now been open for 9 months and is open at 21 NHS sites across the UK. 117 families have all of their initial questionnaires completed and another 100 are in the early stages of joining the study. However, that means they still have lots of spaces available for more families to join as they are aiming for a total of 500.

One of the specific aims in the study is to better understand the growth and development of children with these rare conditions and they are particularly looking at some new methods to devise growth curves that are specific to the genetic condition. This will be really helpful for families and doctors.

To be eligible you need to live in the UK, your child needs to be under 16 and your child needs to have an eligible genetic condition (and can only have one genetic condition). The list of conditions can be easily searched by clicking here.

To enrol go to https://redcap.link/GENROC.

The GenROC team have a web page here. They are also on Facebook here or you can email them at [email protected].

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Read the previous GENROC study post here.