Answers to Frequently Asked Questions. How do I take part in the Born in Scotland study? Click to Sign Up (currently NHS Borders, and NHS Lothian onlu until 10/06/24)[Please note: From 10/06/2024 until further notice, the Born in Scotland pregnancy research study will be trialling a period of 'Opt Out' recruitment in NHS Lothian. This means that newly pregnant individuals will be automatically included in the study. If you wish to take part you do not have to do anything!]Find out more What is 'Opt Out' recruitment? The study is trialling a number of recruitment and data gathering methods to assess the feasibility of a larger Scottish national roll-out. Over 800 pregnant participants have been recruited to date using an ‘opt in’ format, where people choose to sign-up.[Please note: From 10/06/2024 until further notice, the Born in Scotland pregnancy research study will be trialling a period of 'Opt Out' recruitment in NHS Lothian. This means that newly pregnant individuals will be automatically included in the study. Participants still have to to give additional separate consent for DNA analysis.]Find out more What is this study researching? We know from other research that the health and wellbeing of women during pregnancy can affect the health and wellbeing of their babies, both during development in the womb and whilst growing in childhood. The Born in Scotland study will link routinely available information on maternal and child outcomes, with biological samples (for example, blood leftover from routine pregnancy samples) and ultrasound data. The research team hope to answer questions such as:Why are some babies in Scotland born early, or ill?How does our time in the womb influence our health throughout our lives? What happens if I take part? You don’t have to do anything extra to take part in the study. There are no extra appointments or blood tests - you just have to fill in a short consent form so that researchers can securely access your samples and health record data.We plan to use routinely collected pregnancy data and biological samples (for example, blood leftover from your community midwife appointments) where possible. The consent form asks for additional permission, to take a DNA sample from your leftover blood that was collected as part of your routine pregnancy care. The DNA sample would be analysed to look for links between your DNA and your baby's birthweight. If you don't want your DNA to be sampled, you can opt out of this additional consent, but still take part in the main study. You can contact the research team at any time to discuss this further.We may also ask you if we can collect some additional samples from you and/or your baby at the time of birth (such as a blood sample or placenta). We may invite you to take part in other smaller studies but these are optional and you can still be a part of the main Born in Scotland study, without joining the additional studies. If you decide you would like to take part in any additional studies, we will provide you with more detailed information at the time, about exactly what is involved and we will be sure to get your informed consent.[Please note: From 10/06/2024 until further notice, the Born in Scotland pregnancy research study will be trialling a period of 'Opt Out' recruitment in NHS Lothian. This means that newly pregnant individuals will be automatically included in the study. Participants still have to to give additional separate consent for DNA analysis.] Find out moreContact us for more information I am recruited in the study and want to withdraw If you have already been recruited into the study, you can change your mind and withdraw at any time and you do not have to give a reason. Withdrawing from the study will not affect your clinical care.Withdraw How might my data be used? The Born in Scotland study is working in partnership with the Data Trusts Initiative. A data trust is a mechanism for individuals to take the data rights that are set out in law, and pool these into an organisation - a trust - in which trustees make decisions about data use on their behalf.Data Trusts Initiative (this link will take you to a different website)The 'Born in Scotland Data Trust' will develop an infrastructure for trustworthy data stewardship around the study. Stewarding healthcare, administrative and social data collected from pregnant women and their children, this pilot project will explore how data trusts can give research participants, including young people, a voice in decisions about data use. Data from the project will also contribute to the Mother & Infant Research Electronic Data Analysis (MIREDA). MIREDA aims to improve maternal and infant health, particularly among disadvantaged groups by developing new resources and tools for research using routinely collected data.MIREDA (this link will take you to a different website)The Born in Scotland consent form asks for additional permission, to take a DNA sample from your blood that was 'leftover' from the samples collected as part of your routine pregnancy care. The DNA sample may be analysed to look for links between your DNA and your baby's birthweight. If you don't want your DNA to be collected, you do not need to give us permission and you can still take part in the main study. You can contact the research team at any time to discuss this further.[Please note: From 10/06/2024 until further notice, the Born in Scotland pregnancy research study will be trialling a period of 'Opt Out' recruitment in NHS Lothian. This means that newly pregnant individuals will be automatically included in the study. Participants still have to to give additional separate consent for DNA analysis.] Contact us for more information How is my privacy protected? All the information we collect during the course of the research will be kept confidential. There are strict UK laws which safeguard your privacy at every stage.You can contact the research team at any time to discuss this further.Contact us for more information How can I get in touch? Contact us for more informationOr call our office: 0131 242 2480 Who is running the study, and how is it funded? This study is being run by the University of Edinburgh Pregnancy Research Team. The team can be viewed here.The study is funded by:Medical Research CouncilMatCHNet (Maternal and Child Health Network)Data Trusts Initiative I need information in another language/format We currently have study documents translated into Mandarin: Information in Other FormatsPlease get in touch with our study team if you need any study information in another language. Contact us for more informationOr call our office: 0131 242 2480 This article was published on 2024-05-29
