Within the MLD initiative, we work on standardization and harmonization of clinical care and research. The official clinical guideline for MLD is being developed. In the meantime, consensus-based clinical standards for selected themes are developed within the MLDi. Harmonizing certain processes across different international hospitals can benefit care and future research. On this page clinical standards and guidance documents on several themes will gradually be published.
Biological sample collection
Biological samples include all body materials, such as blood, urine, and tissue. These materials are regularly collected in clinical care to, for example, monitor the disease or the treatment. Sometimes biological samples are also collected in the context of research. Biological samples can be used for biomarker research, which is urgently needed in MLD.
Currently, the MLD initiative (MLDi) does not comprise a central biobank for sample collection and storage. As a workaround the MLDi members decided to make a consensus-based wishlist of samples to be regularly or optionally collected in MLD patients. In the MLDi registry it is captured whether samples can be shared or used for research. In this way, steps towards a federated biobank model are made. The biological sample wishlist can be found in the document below.