Dr Marcia Van Riper, Professor at the University of North Carolina is conducting a study  to examine how social determinants of health (e.g. economic stability, education, health and health care, and where you live) influence child and caregiver health-related quality of life and family adaptation in three groups of families: 1) families of children with Congenital Heart Disease, (2) families of children with Down syndrome and (3) families of children with Congenital Heart Disease and Down syndrome.  She is looking for parents from a range of countries including the UK to take part in the survey which takes between 30 and 40 minutes to complete.

She explains further:

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“If you are the parent (18 years of age or older) of a child (under the age of 19 years) who has Congenital Heart Disease, Down syndrome, or both Congenital Heart Disease and Down syndrome, we are inviting you to take part in a research project that we are conducting. The purpose of the study is to examine how social determinants of health (e.g. economic stability, education, health and health care, and where you live) influence child and caregiver health-related quality of life and family adaptation in three groups of families: (1) families of children with Congenital Heart Disease, (2) families of children with Down syndrome and (3) families of children with Congenital Heart Disease and Down syndrome. Participation involves completing a survey that takes 30-40 minutes to complete. If you are interested in learning more about the study, you can email Dr. Marcia Van Riper (vanriper@email.unc.edu), who is a Professor at University of North Carolina at Chapel Hill. Or, you can click on this link which includes additional details about the study, as well as the actual survey.