National coordinator/database manager for the Belgian Cerebral Palsy Registry

at  UZ Leuven

Deze vacature is van het Belgian Cerebral Palsy Registry en is dus geen eigendom van UZ Leuven.
The Belgian Cerebral Palsy Registry (BeCPR vzw/asbl) was founded in 2015 as a national registry in order to systematically collect data from patients diagnosed with cerebral palsy (CP) in Belgium in a way that meets international standards for epidemiological surveillance. The BeCPR brings together a network of medical doctors, therapists, and researchers associated with all five CP reference centres in Belgium. A reliable and protected data transfer is guaranteed by using a technical interface with encrypted data that is managed by the healthdata.be service of Sciensano. The Belgian registry is highly regarded internationally as the BeCPR is an official partner of the Surveillance of Cerebral Palsy in Europe (SCPE), a network of registries of people with CP across Europe that aims to improve understanding of the disease, raise standards of care for persons with CP, disseminate knowledge for patients, health care professionals and key stakeholders, and provide a framework for collaborative research.
The BeCPR is now evolving into a high-quality registry by extending the use of its database beyond the scope of epidemiological research. First, the implementation of treatment data and outcome measures will enable long-term follow-up of people with CP. Second, the BeCPR can assist in health policy decision-making by developing quality indicators as such indicators can be potential targets for action to improve the lives of people with CP. Over the past three years, science-based procedures have been used to outline the framework for the development of a high-quality registry. A significant challenge now presents itself to effectively implement this framework in practice.

RESPONSIBILITIES

As a national coordinator and database manager, you will be responsible for the follow-up and validation
of the national data collection. You will monitor the data quality and collaborate in scientific research at
the (inter)national level. You will work on the implementation of treatment data and outcome measures,
and the integration in the registry of quality indicators for CP in Belgium.

OTHER ADMINISTRATIVE TASKS

• To follow-up of the administrative issues of the vzw/asbl
• To follow-up the finances of the vzw/asbl
• To organize and follow-up the legal obligations of the vzw/asbl: organizing board meetings, annualplenary meetings, etc.
• To follow-up annual tax filing