Do you have experience with genetic newborn screening? Or are you a parent with concerns about newborn screening? Could you give feedback on a review considering Next Generation Sequencing techniques for pre-symptomatic identification of genetic diseases in newborns?
Skills / interests: Patient and public input
Would you be interested in helping us with this article focused on implementing and expanding newborn screening using new genetic techniques?
I am looking for a consumer who would be willing to peer review this Cochrane systematic review “ Next-Generation Sequencing (NGS) techniques for pre-symptomatic identification of genetic diseases in newborns." Cochrane considers a consumer to be a person with experience of the condition (in this case, newborn screening and genetic diseases), either as a physician or as a carer/family member of a newborn baby or an older child. From a consumer perspective, we are interested if the outcomes that we have chosen for our review feel relevant for those who have concerns about the implementation of newborn screening with the introduction of genetic tests, such that it will be helpful to physiscians, patients and carers with healthcare decision making.
While you are welcome to provide feedback on any aspect of the review, you can focus your attention on the outcomes. Going on with the review process we will also ask your help with other aspects of the review, with particular focus on the Plain Language Summary. Our aim is for this to be a manageable task, that does not overburden consumer reviewers.
Thank you in advance for considering!