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The Engage with Developmental Language Disorder (E-DLD) project: Cohort profile.

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Summary

The Engage with Developmental Language Disorder (E-DLD) database is the first international resource for individuals with DLD, facilitating research and connecting affected people with academics. Initial findings show increased psychosocial difficulties in participants, highlighting the need for further DLD research.

Keywords:
cohortdatabasedevelopmental language impairmentresearch facilitationspecific language impairment (SLI)

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Area of Science:

  • Neurodevelopmental Disorders
  • Speech and Language Sciences
  • Clinical Psychology

Background:

  • Developmental Language Disorder (DLD) affects 7.6% of children but suffers from low public awareness and underfunding.
  • Limited research and recruitment challenges hinder DLD studies.
  • The Engage with Developmental Language Disorder (E-DLD) initiative established the first international participant database for DLD.

Purpose of the Study:

  • To describe the demographic and clinical characteristics of families and individuals with DLD registered in the E-DLD database.
  • To provide preliminary insights into the linguistic and psychosocial profiles of DLD participants.
  • To assess the feasibility and utility of an international DLD participant database for research.

Main Methods:

  • E-DLD database recruitment via website, collecting demographic data.
  • Annual surveys for members, with age-specific content for children and consistent content for adults.
  • Assessment of speech and language therapy support, educational support, social skills, developmental milestones, healthcare, and mental well-being.

Main Results:

  • The database includes 196 parents of children with DLD and 20 adults with DLD or suspected DLD.
  • Participants confirmed linguistic profiles consistent with DLD.
  • Both children and adults exhibited higher rates of psychosocial difficulties compared to general population norms.

Conclusions:

  • The E-DLD participant database is a feasible and valuable resource for DLD research.
  • Elevated emotional, behavioral, and sleep difficulties were observed in child participants.
  • Adult participants with DLD reported poorer well-being, underscoring the need for targeted support and research.