Newborn Screening Study

Should ALD be included as part of the newborn screening programme?

Are you a man aged 16 and over affected by ALD/AMN? Or their family member/carer?

Complete our survey and let us know your thoughts about ALD being included as part of the newborn screening programme:

The deadline to complete the survey is the end of Monday 11th July 2022.


Alex - The Leukodystrophy Charity

Survey Information

Survey aims:
This survey is designed to capture attitudes and opinions about whether X-ALD should be included as part of the newborn screening programme. It can be completed by men (aged 16 or over) affected by ALD or AMN and / or their (male or female) family members and carers. The survey should take approximately 30 minutes to complete.

Who is funding the survey?
This survey is funded by Alex TLC. The survey work (including design and analysis) will be undertaken by the research team at Genetic Alliance UK.

What questions will the survey ask?
The survey will ask for some background information about you/the person you care for / your family member. There will then be questions about:

– getting the diagnosis
– quality of life for the person affected
– availability of newborn screening for X-ALD
– benefits of screening for X-ALD
– risks of screening for X-ALD
– impacts of screening for X-ALD

During the survey you will have the opportunity to provide comments to elaborate on your experiences and attitudes, if you wish.

Who will know I have taken part?
Your responses will be submitted to the research team at Genetic Alliance UK; your name and email address details will NOT be collected. Genetic Alliance UK will not tell anyone that you have taken part in this survey. Your anonymous survey responses will be kept securely so that only Genetic Alliance UK team members and Alex TLC staff can access them.

Alex - The Leukodystrophy Charity