Patients with MLD can participate in the MLD initiative (MLDi) registry. We want to collect data on the clinical course of the disease, the brain MRI’s and the results of the genetic testing of as many MLD patients as possible. Collecting these data is necessary to facilitate further research.
Participation
There are three ways to be enrolled in the MLDi registry as a patient with MLD:
❶ By a healthcare professional. After asking for permission to participate, he or she will initiate the registration. More information can be found here.
❷ By yourself. A patient with MLD or a guardian can sign up by sending an email or click on Sign up.
❸ By a researcher of the MLD initiative. If data reuse of a patient with MLD is permitted, data at the local hospital can be entered into the MLDi registry.
What participation involves
For this study, we will first ask you to send a copy of medical letters, the genetic test results proving the diagnosis of MLD, and the MRI(s) already obtained, if we do not already have those. Subsequently, we will ask your doctor to repeatedly fill out questionnaires. In addition, we will ask you (patient/parent/guardian) to repeatedly fill out questionnaires. Participating in the questionnaires is optional. Each time you will receive a maximum of 2 or 3 questionnaires. The frequency and number of questionnaires is dependent on the age, ranging from one to four times a year. The questionnaires are sent by a link in an email, so you can simply digitally fill them out. These questionnaires are often part of the standard care for MLD that you receive.
Possible benefits and disadvantages
You/your child will not directly benefit from participation in this study. There are no disadvantages of participation in this study.
Do you want to participate?
Sign up. Then we will send you more information and answer all your questions. After that, you can decide whether or not you would like to participate.
Do you have any other questions?
Please, contact us.