Document Downloads

UK IMD Research Studies (Jan 2020)

Information for Research

Please see document downloads for an EXCEL file which lists active research studies recruiting individuals with inherited metabolic disease in the UK.

These research studies include:

  • Local or investigator-led studies
  • Studies of the natural history or pathogenesis of disease
  • Clinical trials of new treatments, medications or procedures

The research registry can be searched by disease name or NCT (national clinical trial) number.  It is updated approximately every 4-6 weeks.

If you are a patient, parent or carer and are interested in learning more or participating in one of these studies, then please do not contact the research centre directly – but do speak to your local clinical team who will able to give you advice as to eligibility for the study and arrange a referral to the research study centre if appropriate.

Studies are listed as:

  • Open – an active study, currently recruiting participants

  • Active, but closed to recruitment – the study is ongoing but no new participants are required

  • Open, by invitation only – only specific individuals will be approached by the research team to participate.

If you are a researcher in the field of inherited metabolic disease and wish to add a study to this database then please contact Shaun Bolton for further information.



Research Contact
Dr Shaun Bolton