How to contribute to the MLD initiative
The MLD initiative aims to facilitate research that contributes to improving the disease management of metachromatic leukodystrophy. As a healthcare professional you can help the MLD initiative in three ways:
❶ Your center can be one of the collaborating centers of the MLD initiative. In this way, local researchers/clinicians at your center can add de-identified patient data themselves to the database. Please contact us.
❷ Enable appropriate access to anonymised (retrospective) data if you follow MLD patients in your center. Researchers from our team can help to include the data in the database. Please contact us.
❸ If you want to use the data in the MLDi database for research purposes, you can request access. Only anonymous or pseudonymous health information will be made accessible to qualified researchers who are granted permission by the Board. Different parties can request data including academic centers, regulators, HTA bodies, and companies.