Should MLD be added to the newborn screening programme in the UK? Have your say by submitting your comments
The UK National Screening Committee (UK NSC) has opened a consultation on evidence relating to newborn screening for metachromatic leukodystrophy (MLD).
They recently published a rapid review summarising the current available evidence relevant to newborn screening for MLD. They concluded that ‘the current published evidence base alone is not adequate to support implementation of NBS screening for MLD.’ To read the full report: Metachromatic leukodystrophy – UK National Screening Committee (UK NSC)
The UK NSC is now consulting on whether to change its recommendation on this condition and is accepting public comments. They are asking for comments from members of the public, including patients and family members who have experienced the condition.
As a charity we will be responding to the consultation and submitting our own comments. We ask that members of our community do the same. Please be aware that you do not have to be affected or have a loved one affected by MLD to respond.
Have your say and let them know whether MLD should be added to the newborn screening programme in the UK: Submit your comments as a member of the public
The deadline to submit your comments is Tuesday 5th August 11:59pm (BST).
Completing the online form
We have produced a consultation guidance document. This provides information on what areas to expand on in your response and what criteria to refer to for each of the online questions: Alex TLC Consultation Guidance
For those who are affected/have a loved one affected by MLD it is important to focus on the struggles you’ve experienced receiving an accurate and timely diagnosis, how it has affected you/your loved one and how newborn screening could have helped.
If you have any questions or need any help completing the online form, then please email info@alextlc.org