Metachromatic (MLD) Research Study Opportunity

Do you have MLD or care for someone with MLD?

We want to share information about a new study that involves caregivers of people with metachromatic leukodystrophy (MLD) can get involved in.

The study is being conducted by Oracle Fieldwork, they are looking to speak to 15 people in total, as follows:

  • 5 Late infantile MLD caregivers
  • 5 Early juvenile MLD patients/caregivers
  • 5 Late juvenile MLD patients/caregivers


Aim of the study

To find out more about the symptoms and impacts of MLD through interviews with individuals with juvenile onset MLD and caregivers of late-infantile, early-juvenile, and late-juvenile onset MLD. They would like to talk about your experience of living with MLD or experience of caring for a person who lives with MLD and how this condition and its symptoms impact your life, as well as your views on how well a short 6-item questionnaire, captures the experience of living with MLD.


What’s involved?

  1. A background questionnaire which will include some questions about themselves (and the person they care for). This is very short.
  2. A video or telephone interview where a trained interviewer will ask participants questions about the impact of MLD impacts on people’s lives and their opinions on a brief questionnaire. The interview will last around an hour.


Result of Taking Part

You will receive £75 for taking part in the study (which we can pay by bank transfer, or emailed vouchers such as Amazon, M&S or John Lewis)

They are also offering to donate £50 to Alex TLC, for every person who takes part via your organisation so please mention us when you get in touch


Exclusion Criteria

The only exclusion criteria for this study are as follows:

  • Cannot include anyone who has participated in a clinical trial of recombinant human arylsulfatase A (rhASA) enzyme replacement therapy (also known as HGT-1110, SHP611, or TAK-611)
  • Or anyone who has received gene therapy treatment targeting MLD


To find out more, contact Clare at Oracle Fieldwork on 07796 686 321 or


Alex - The Leukodystrophy Charity