There are two opportunities to be involved in research that we would like to share with you.
ALEX TLC NEWBORN ALD SCREENING STUDY
Are you a man aged 16 and over affected by ALD/AMN? Or their family member/carer? Should ALD be included as part of the newborn screening programme? Complete our survey and let us know your thoughts about ALD being included as part of the newborn screening programme. The deadline is the end of Monday 4th July.
For more information and to complete the survey: smartsurvey.co.uk/s/LPRZN8/
RISK-FEEDING STUDY
Are you a family member, carer or guardian of a child (under the age of 16 who is currently risk feeding or has risk fed in the past? Do you have experience with risk-feeding discussions and decisions with medical professionals?
Join a focus group on Friday 1st July at 1:30pm, discussion will be facilitated to develop a consensus of questions which should be asked at risk-feeding decisions. The deadline for applying to take part in the study is Wednesday 29th June.
For further information: alextlc.org/families-needed...
Are you going to take part?
Do you have any questions?
Would you like to find out more about the studies?
Are you unsure how to apply to take part?
Please leave a comment or contact suzanne@alextlc.org
