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This is where families and carers can access the MLD Registry Questionnaire. Before participating, please ensure you have familiarised yourself with all of the information and have completed the consent form most applicable.

Consent Form 1: For parent or guardian of adult with MLD who does not have capacity to complete it themselves

Consent Form 2: For parent or guardian of child with MLD

Consent Form 3: For patient with MLD

If you would like further information or a paper copy of the Consent Form and Registry Questionnaire sent to you, please email

Once you have completed the Consent Form, you will be sent a password to participate in the Patient Registry Questionnaire below. The average times this takes is just under 20 minutes and to make the process as smooth as possible, we recommend you have the patient’s medical and drug records to hand.

Begin Questionnaire