Acknowledgements

PEREGRIN Study

Investigators: Claire Hughes, Kate Baker & Helen Dolling

Next Generation Children (NGC) Project

Investigators: Lucy Raymond & David Rowitch

Research team: Courtney French, Isabelle Delon, Karyn Megy, Alba Sanchis-Juan, Topun Austin, Shruti Agrawal, Ajay Kumar, Helen Dolling & NIHR BioResource-Rare Disease

Sharing Parents' Experiences (SHAPE)

Investigators: Claire Hughes, Stephanie Archer

Research team: Helen Dolling & Or Perah Midbar Alter

Next Generation Children project and PEREGRIN study were funded by the Rosetrees Trust, Newton Trust, National Institute for Health Research for the Cambridge Biomedical Research Centre & NIHR BioResource Grant RG65966.

We want to thank all families who participated in the PEREGRIN Study and contributed to this resource.