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.

Contacts

Research Contact
Dr Shaun Bolton