To understand parents’ experiences of having a child diagnosed with CCALD

Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD). The study is a first of it’s kind and will help to provide evidence towards Newborn screening for ALD. It is a valuable study with the results providing a good opportunity to improve the circumstances for other families. The results will directly feed into initiatives to improve diagnosis and access to treatments for ALD patients.

 

If you have any questions or would like further information, please contact suzanne@alextlc.org

Quote from Participant

“Taking part in the study was easy as it just involved having a chat about my experience of having a child diagnosed with ALD, what happened afterwards and how the family coped.  The researcher guided the conversation with a few questions and no preparation in advance was needed.”

CCALD Study Information Sheet

Please click on the link to view the participant information sheet containing further details about the study: CCALD Study Information Sheet

Researchers Letter to the Alex TLC Community

Hello,

Our names are Dr Hilary Piercy and Charlotte Nutting and we are researchers at Sheffield Hallam University. We are conducting a research study in collaboration with Alex TLC to understand the psychosocial impact on parents of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD). The purpose of the research is to increase medical and health care professionals’ awareness of CCALD and support efforts to improve early diagnosis and treatment.

We are seeking to recruit parents who are willing to be interviewed as part of the research. Interviews will be conducted by telephone or zoom and last about an hour.

If you are interested to take part in the study, we would love to hear from you. To find out more about the study, you can email us using the contact details below.

Thank you for taking time to read about the CCALD research study.

Kind regards,

Dr Hilary Piercy: h.piercy@shu.ac.uk   

 

 

 

 

 

 

Charlotte Nutting: c.nutting@shu.ac.uk