# Noonan Syndrome

**Category:** [Growth Charts](https://forum.rcpch.tech/c/rcpch-digital-growth-charts/6)
**Created:** 2026-02-02 14:58 UTC
**Views:** 10
**Replies:** 1
**URL:** https://forum.rcpch.tech/t/noonan-syndrome/669

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## Post #1 by @michael.barton

We had a request to the RCPCH Digital Growth Charts team about specialist charts for Noonan Syndrome.

Have raised a GitHub issue to track the request here: https://github.com/rcpch/digital-growth-charts-server/issues/265 

A quick Google found this study https://pmc.ncbi.nlm.nih.gov/articles/PMC12668709/ with [associated LMS values](https://pmc.ncbi.nlm.nih.gov/articles/instance/12668709/bin/Supplementary_material-Suppl.1-s1.pdf) but thought I’d also start a thread in case there was other background worth capturing.

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## Post #2 by @pacharanero

Would be good if we could bring the original requesters of the feature into the forum, so we can check with them the suitability of what we build.

Also we could have a look for UK based experts in Noonan Syndrome so that we have access to a 'panel' of sorts for signoff of the feature when built. 

As for building the feature, it does seem fairly straightforward, as the data in the PDF seems like the right kind of statistical parameters for us to use. 

We should probably (as RCPCH) contact the lead author marco.cappa@opbg.net to ask for:

1. Written permission to use the data for our growth charts
2. The data in a file that is not a PDF (we can of course extract the data from a PDF but there is a larger risk of error)
3. Assure them that we will make these data available in the open source python package and growth references repo, and that they will be fully acknowledged as original authors.

The data files are interesting in that they include growth velocity and bone age, so there may be some new challenges in how we add this data to our repository of all growth references in a consistent way, and how we build the API for it. Simon's work recently on modelling and resampling the data for daily LMS would be worth doing, with acknowledgement of the original authors.

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**Canonical:** https://forum.rcpch.tech/t/noonan-syndrome/669
**Original content:** https://forum.rcpch.tech/t/noonan-syndrome/669