Frequently Asked Questions
Why have I been invited to take part in the preschool phase of the study?
You have been invited to take part in the preschool phase of the EDiTS Study because you have a child aged between 3 years 0 months and 5 years 11 months who is either developing typically or has a confirmed diagnosis of TSC. You must be at least 16 years old to participate, and able to understand and communicate in English. Please, be aware that recruitment for the preschool phase is now closed.
If my child participated in the infant phase of the study, do they have to take part in the primary school follow-up?"
No. If you consented to be contacted again when taking part in the infant or preschool phases of the study, we will be directly in contact with you to ask whether you would like to participate in this phase. However, participation in the primary school follow-up is completely voluntary and choosing not to take part will not disadvantage you or your child in any way.
Do we have to have a home visit from the research team in order to take part?
We will aim to conduct many of our assessments virtually via Microsoft Teams during the primary school phase. However, we may need to meet you in the family home, meaning our research team will travel to you. We feel this provides a more flexible and accessible approach for you and your child. We will do our best to provide the most flexible options, including weekends and evenings. Assessments can be interrupted to meet the families’ needs and parents can stop them at any time for any reason. If you prefer, we can complete some of the assessments remotely via video call.
Does Covid-19 impact the way the research will be conducted?
It is likely that we will be living with some Covid-19 restrictions for some time, so researchers will adhere to the following precautions in line with government guidelines and King’s College London protocols.
Prior to the home visit, families will be asked to complete a brief Covid-19 screening questionnaire to identify any potential increased risk of exposure to the virus and to determine whether it is safe for a home visit to take place.
During the testing phase, all researchers will undergo bi-weekly lateral flow tests to confirm that they have a negative Covid-19 test result before entering families’ homes.
Whilst testing, researchers and participants will be asked to maintain social distancing where possible and wear personal protective equipment (PPE; face mask, shields, and gloves). Good hand and surface hygiene will be practised by the researchers and participants, including regular hand washing/sanitising and using antibacterial wipes to clean any equipment.
Following the home visit, researchers will rely on the NHS Track and Trace system to be alerted to any potential exposure to the virus.
Please note: Vulnerable families (defined in line with government guidelines at the time of data collection) will be asked not to host home visits in order to minimise their risk of infection. Instead, these families will be asked to complete the priority-ordered minimal assessment protocol remotely where possible, such as parent-report questionnaires and interviews conducted via video call.