Area of expertise and the Healthcare Provider’s contribution to care for patients within the MetabERN Network
University Hospital of Birmingham NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust contains experts in the field of metabolic diseases. As well to expert clinicians and consultants, the Trust has a highly specialised multi-disciplinary team of nurses, dieticians, physiotherapists, pharmacists, psychologists and a host of other allied health professions who all contribute to the expertise of the Metabolic service.
The Trust hosts the largest solid organ transplantation programme in Europe, the largest renal transplant programme in the United Kingdom and is a national specialist centre for heart and liver transplantation. The Trust has recently opened its Centre for Rare Diseases, a clinical facility that brings together multi-speciality and multi¬disciplinary teams to deliver the best care for rare disease patients.
As well as a wealth of clinical expertise, the Trust is highly active in the fields of national and international research. The Trust undertakes observational and interventional studies, including disease registries, drug trials (including phase 1-3 trials) and medical device trials. These studies are mixture of industry led and investigator led studies. The Trust is currently the co-ordinating partner for an EC funded project ‘An EU rare diseases registry for Niemann-Pick Disease type A, B and C. (NPDR)’, working with clinicians, researchers and patient societies across Europe to set up and deliver an international disease registry for Niemann-Pick Diseases.
Another exciting research project currently being undertaken by the Trust is an Investigation Medicinal Product trial for Alstrom Syndrome. This study is an investigator led, industry supported study to test a new potential symptomatic drug treatment. Dr Tarek Hiwot is the Chief Investigator for this study and also the clinical service lead for the UK Alstrom Syndrome service. This study heavily involves the Alstrom Syndrome UK patient society, which allows for the voice of Alstrom Syndrome patients are be heard in this important study.
SPECIFIC TREATMENTS AND INTERVENTIONS PROVIDED BY THE HCPs
University Hospitals Birmingham NHS Foundation Trust provides a number of comprehensive treatments and interventions for metabolic disorders. The Trust provides enzyme replacement therapies for Lysosomal Storage Disorder patients and specific treatments for all metabolic conditions. The Trust also actively participates in a number of clinical trials for metabolic conditions. A new model of clinic used at the Trust are One Stop Clinics, where all applicable testing and investigations can be conducted during a clinic visit, negating the need for multiple appointments at multiple centres.