CHU De Liège

Liège, BELGIUM

Area of expertise and Healthcare Provider’s contribution to care for patients within the MetabERN Network

The CIMM is the inter-institutional Center dedicated to the care of patients with inborn errors of metabolism (IEM). It is composed of 3 functional subunits located in the cities of Liège and Charleroi:
– The CHU-Liège,
– The CHC-Liège
– And the IPG-Charleroi.
The functional units have been approved and registered in 1998 by the Belgian National Health authorities for managing and providing highly specialized interventions/care to patients (both adults and pediatric patients) affected by inborn metabolic disorders. The CIMM ensures the exchange of best patients’ care practices, the optimization of the medical resources at the level of the region and extends the system of patients’ referral between the hospitals of the healthcare network.

The CIMM, in particular, has developed a multidisciplinary expertise for providing highly specialized interventions to patients with amino and organic acids-related disorders (AOA) and lysosomal storage disorders (LSD).

In compliance with the Belgian national health insurance system requirements, the patient’s cares are organized on a multidisciplinary model. The core multidisciplinary team includes doctors, specialized nurses, nutritionists, psychologists, social workers and clinical biochemical geneticists. The CIMM collaborates with first line physicians and other professionals (pediatricians, neurologists, nephrologists, radiologists, cardiologists, revalidation services …) of the HealthCare Provider network. The CIMM is taking care of pediatric and adult patients.

The commitment of the CIMM is:
– To provide the best patient’s cares based on up-to-date knowledge and evidence-based data, with a special attention to patient education, empowerment and autonomy, especially regarding diet aspects and compliance;
– To provide advisory services to professionals of primary, secondary and tertiary level care centers, on a national and international basis;
– To actively develop, implement and collaborate in research activities in the field of IEM;
– To organize and administer medical and professionals education and training programs in the field of IEM (especially in AOA and LSD) in the context of its academic recognition.
Indeed, the CIMM and its CHU teaching hospital has a position at the Faculty of Medicine of the University of Liège

Specific treatments and interventions provided by the HCPS

  • Prevention: newborn screening for IEM at a regional level for a large proportion of affiliated maternity hospitals.
  • Diagnostic services:
    – Biochemical metabolic diagnosis
    – Molecular and enzyme diagnosis (genetic centers of CHU and IPG) and genetic counseling.
  • Ambulatory services: the CIMM provides multidisciplinary cares with the nutritionists, the psychologists and the social workers, for PKU and other amino/organic acid related disorders, in view to achieve the best metabolic control and to improve patient’s compliance to diet and treatment as well as to promote patient’s empowerment and autonomy. In between visits, professionals of the CIMM are committed to provide advices and treatment/diet adjustment by phone and email. Paramedical professionals perform home and school visits to give information or counsels.
  • Acute care: The CIMM assumes a permanent (24/7) on-call availability for emergency advices and treatments, both for patients and professionals. It ensures management of patients with metabolic decompensation during hospitalization, in collaboration with appropriate medical units (pediatric, internal medicine, dialysis or intensive care units). The CIMM has formalized a cooperation agreement with the pediatric nephrologic center hosted in the same hospital and recognized by the Belgian National Health Authorities, for urgent toxic removal procedures (hemodialysis, hemodiafiltration) in patients with intoxication-related IEM.
  • Other Interventional therapeutic services: The CIMM coordinates therapy and management in one-day clinic for patients receiving enzyme replacement therapy (ERT) in the CIMM or affiliated hospitals, or in case of home therapy. It also ensures management of patients with complex diseases needing orthopedic, cardiologic, nephrologic and neurologic expertise. The CIMM has access to renal, cardiac and liver transplantation as well as to hematopoetic and stem cell transplantation.
  • Rehabilitation services: The CIMM collaborates with local rehabilitation services for long-standing reeducation following acute decompensation or for chronic management of diseases complications.
  • Social care Services: social workers/nurses of the CIMM are deeply involved in the psychosocial aspects of the disease’s management. They participate to school or Institution search for disabled patients, take care of reimbursement procedures for ERT or orphan drugs, they accompagny patients in case of medical expertise for the health insurance and are involved in family associations or other relevant stakeholders.

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FRANCOIS-GUILLAUME DEBRAY

CHU DE LIEGE, BELGIUM

Dominique ROLAND

Institut de Pathologie et de Génétique, Génétique Humaine, département des maladies héréditaires du métabolisme, Gosselies, Belgium Center Inter Institutional for Metabolic Diseases (CIMM), Liège-Charleroi, Belgium