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. Centers can join the collaborative network and/or become a Partner of the MLDi registry. Partners of the MLDi registry can contribute data to the registry. Please contact us.
❷ If you follow MLD patients in your center, you can ask them to participate in the MLDi registry or refer them to this website. Families can sign up themselves or you can do it on behalf of them. Please sign up or contact us in case of any questions.
❸ If you want to use the data from the MLDi registry 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.
How to join the MLD initiative?
If you are interested to join the MLD initiative collaborative expert network or become a Partner of the MLDi registry, you can simply express your interest by contacting us. We will ask you to write a brief motivation letter on why you would like to join.
- Centers can join the MLDi collaborative network when they are:
- engaged in clinical care and/or research within the MLD field;
- and motivated to participate (expressed in a short motivation letter).
- Joining the collaborative network means that:
- a physician/PI (or their representative) representing the center should at least join the MLDi meetings 3 times a year.
- Centers can become a Partner of the MLDi registry when they are:
- engaged in clinical care and/or research within the MLD field;
- can sign the Joint Data Registry Agreement;
- and motivated to participate (expressed in a short motivation letter).
- Becoming a Partner of the MLDi registry means that:
- your center contributes data to the MLDi registry;
- your center can use data from the MLDi registry (after approval) without further contractual agreements.