Knowledge agenda connects researchers, doctors, patients and institutes
On 19 June, Princess Laurentien of Orange assumed her role as founder of number 5 foundation a copy of the Knowledge Agenda Hereditary Metabolic Diseases offered. The inspiring meeting was attended by more than 40 policy makers, experts and stakeholders in the field of inherited metabolic diseases.
United for Metabolic Diseases
In recent years, Princess Laurentien has played an important role in the establishment of United for Metabolic Diseases (UMD), which developed this knowledge agenda. UMD is a national consortium that joins forces of doctors, laboratory specialists and researchers from the six Dutch academic metabolic centers, together with the patient association VKS. In collaboration with the Knowledge Institute of the Federation of Medical Specialists, the knowledge agenda was put together for a year and a half. The document describes the 10 most important research questions and objectives within the metabolic care and research field and serves as a blueprint for research in the coming decade. The process of creating this knowledge agenda is unique, because all those involved in the metabolic care and research field have had equal input.
Involvement
After the handover to Princess Laurentien, those present entered into a conversation with each other. In order to realize the knowledge agenda, the involvement of all parties is required. The themes ‘FAIR data sharing‘, ‘Therapy of bench until bedside‘ and ‘UMD as a successful example of national cooperation between specialist care and research’ were central during these dialogue sessions. The ultimate goal of the knowledge agenda is to improve the lives of patients and families affected by inherited metabolic diseases. During the meeting, the stakeholders provided essential connections and ingredients to draw up the concrete step-by-step plan with which the UMD can take this mission further together with all stakeholders.
Contribution Maastricht UMC+
From the MosaKids Children’s Hospital of Maastricht UMC+, Dr. Irene Körver-Keularts (clinical chemist) and Prof. Dr. Estela Rubio Gozalbo (pediatrician metabolic diseases) closely involved in the UMD and knowledge agenda. They were present at the meeting on 19 June. Also dr. Laura Steinbusch (laboratory specialist clinical genetics) was involved in the realization of the Knowledge Agenda. The MUMC+ specializes in metabolic diseases in children and is a center of expertise in the field of galactosemia and fructosemia.
The Knowledge Agenda Hereditary Metabolic Diseases can be viewed at the UMD website.
2023-07-05 12:00:00
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