Many people help with our research and we would not be able to continue without them. Every person who gives time to help with this research means we understand more about how best to communicate positive (abnormal) newborn bloodspot (the ‘heel prick’) screening (NBS) results.

Our study sites for the ReSPoND project are Kings College Hospital (London), the Evelina at St Thomas’ Hospital (London) and Birmingham Women and Children’s Hospital (Birmingham). If you are a parent of a child who is looked after by one of the teams at these hospitals after receiving a positive (abnormal) NBS result (for instance, the Cystic Fibrosis, the Sickle Cell, the Endocrine (Hypothyroid), the Heamoglobinopathy (Sickle Cell teams) or the metabolic teams and you would like to know more information about being involved in the study, please view the Information Sheet or contact us using the details on the Contact Us tab.

We are also recruiting parents of babies who have received as negative (normal) NBS screening result to help us with this study. If you are a parent of a child who has received a negative (normal) NBS result and you would like to know more information about being involved in the study, please view the Information Sheet or contact us using the details on the Contact Us tab.

Participate in our Parent Group

We have a special group of parents whose child has received a positive (abnormal) screening result who meet with the research team every six months. We also sometimes email members of the group to ask for advice on a particular issue. The purpose of this group is to provide advice to the research team on the way the project is running, the methods we are using, discuss the things we have found out and make suggestions for what we might do next. If you think this might be something you would be interested in knowing more about, please contact us using the details on the Contact Us tab.