DOI: 10.15125/bath-01458
title: Engage with Developmental Language Disorder Accessible Databases, October 2024 release

description: These datasets contain information gathered at study sign up and within the yearly surveys for parent members of the Engage with Developmental Language Disorder Project (or E-DLD project).  Parents signed up to the E-DLD project as they decided to be part of the research database project, where they received monthly or quarterly emails about research projects currently recruiting participants. On sign up, they gave demographic information about themselves, their family and their child with DLD along with indicating what areas of language their child struggles with, any co-occurring conditions and their child's official DLD diagnosis. About two weeks after sign up, they received an invitation to complete a yearly survey.  The yearly survey content changes according to the child's age, which is determined at the beginning of the yearly survey. Completion of the yearly survey was optional. In total, these databases contain 198 parents within the sign up database and 137 parents who completed at least one year (but often multiple years) of the yearly survey. Children were aged between 3 and 15. Data was collected between October 2020 and April 2024.
description: All data was collected online through the REDCap online survey platform. E-DLD members have found out about the project a variety of ways, but found the sign up link through our website in most instances.  Parents indicated their status as a parent of a child with DLD in an initial question and then were presented with an information sheet and consent forms (including consent for their data to be made more widely accessible). After fully consenting, parents were asked to fill in the sign up survey.  Parents who indicated their child has autism as their main diagnosis were sign posted to autism research databases and are not included in these databases.  Two weeks after sign up (and thereafter on a yearly basis) parents were invited to complete a more in depth yearly survey, which is tailored to the child's specific age. The yearly survey was optional and the parents received two reminders after the initial email. Thereafter, they did not receive further reminders.  Parents were occasionally emailed about incomplete sign up surveys and provided with a link and return code to complete their survey. This was also optional.
description: The data processing was conducted by Michelle St Clair with assistance from research assistants assigned to the project.
description: The dataset consists of Stata files (.dta), with a version provided in SPSS (.sav) format.
description: Some data has been extensively recoded to produce more meaningful data that can be easily analysed (e.g., bedtimes were coded into half hour slots rather than retaining the free text responses, which varied substantially across participants).  Qualitative content was retained where ever possible, but has also been anonymised to prevent disclosing parent or child identities.
description: Further relevant documentation may be found in the following resources.

   St Clair, M. C., Horsham, J., Lloyd‐Esenkaya, V., Jackson, E., Gibson, J., Leitão, S., and Botting, N.,  2022.   The Engage with Developmental Language Disorder (E‐DLD) project: Cohort profile.    International Journal of Language & Communication Disorders, 58(3), 929-943.  Available from: https://doi.org/10.1111/1460-6984.12835.