A UK wide research registry for inherited peripheral neuropathy

<h3></h3> Charcot-Marie-Tooth disease (CMT) is one of the commonest genetic neurological diseases affecting 1 in 2500 people). We have established a UK wide database for patients with CMT who are willing to be contacted for ethically approved research projects. Up until now there has been no such database for individuals with CMT in the UK representing a major barrier for recruiting to clinical trials for this rare group of diseases. The UK CMT database is hosted in the secure UCL ‘safe data haven’ and has undergone favourable ethical review (IRAS 319927). Any individual with CMT resident in the UK can register on the database via the following weblink https://redcap.idhs.ucl.ac.uk/surveys/?s=DN44N9HM84NH7XN7. This means that other than directing interested and eligible patients with CMT to this webpage, the clinician is not required to consent or enter data for the participant. A part time database manager will be employed to ensure the accuracy of the entered demographic and clinical data. Clinicians caring for database participants may therefore be contacted by the database manager to corroborate clinical details and in particular the type of genetic variant.