Area of expertise and the Healthcare Provider’s contribution to care for patients within the MetabERN Network
University Medical Center Hamburg-Eppendorf
Hamburg, GERMANY
The University Medical Center Hamburg Eppendorf has a long tradition in the treatment of patients with lyososomal storage disorders. The “International Center for Lysosomal Storage Disorders” ICLD cooperates with different departments of the university clinic for diagnosis and therapy of the patients.
The outpatient clinic offers specialized treatment for patients with LSDs like enzyme replacement therapy. It is involved in the development of new therapeutic strategies like intrathekal enzyme replacement therapy e. g. in NCL 2.
Gene therapy of the brain in MPS IIIa will start by the end of 2016.
Our center is the leading center for stem cell therapy of LSDs in Germany. The center takes part in different clinical outcome studies.
The center has been involved in the development of guidelines in the treatment of these diseases. In addition, a second opinion counseling is offered.
There is a long standing tradition of close cooperation with patient support groups so for example the center organizes the “International Symposium on MPS and related disorders” 2016 in cooperation with the German “Gesellschaft für Mukopolysaccharidosen”.
Scientifically, the center focuses on mechanisms of neurodegeneration in MPS/NCL, the development of bone diseases in mucolipidosis II. In addition, we try to characterize new disorders within the group of NCLs.
SPECIFIC TREATMENTS AND INTERVENTIONS PROVIDED BY THE HCPs
- Acute care:
– Care for patients with acute neurological, orthopedic, cardiac and other problems. There is a 24-h- background service. - Ambulatory services:
– As LSDs are in general multiorgan diseases the outpatient clinic organizes the complete medical care for these patients in cooperation with other departments - Diagnostic services:
– Enzymatic and molecular characterization of the different LSDs, analysis of biomarkers - Interventional therapeutic services:
– Enzyme replacement therapy
– Intrathecal enzyme replacement therapy
– Hematopoietic stem cell therapy
– Different neurosurgical and orthopedical operation procedures - Social care services:
– Help for patients and families of patients with progressive intellectual and neurological deterioration
Pallative care services
– Service for terminally ill patients on an ambulatory and in-patient setting - Genetic diagnosis and counseling:
– Molecular diagnosis/counseling of all LSDs in cooperation with the Institute for Human Genetics. - Rehabilitation service within the HCP available
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