Information for patients
There is close collaboration with the eHealth platform, a Belgian public institution whose mission is to support patient information exchange between healthcare professionals. They ensure the respect of the privacy rights and patient confidentiality. Their aim is to optimize continuous care, patient security, simplify administrative steps and to offer support for health care politics. The eHealth platform services also provide a manner to generate a unique identification number per patient based on the National Social Security Number, thus maintaining the patient’s anonymity.
In order to be created, BNMDR had to submit a document to the privacy commission at the government level. BNMDR has to follow specific procedures on data processing to safeguard confidential data to the patients. Relevant medical data is gathered from patients having been diagnosed with neuromuscular diseases. The information is collected annually from willing patients. It is stored securely and is coded.