{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T07:09:54Z","timestamp":1788246594976,"version":"build-2803163510"},"reference-count":46,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2022,12,24]],"date-time":"2022-12-24T00:00:00Z","timestamp":1671840000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Intl J Lang &amp; Comm Disor"],"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Public awareness of Developmental Language Disorder (DLD) is lower than other neurodevelopmental disorders, despite its high prevalence of 7.6%. This lower awareness means recruitment for DLD research studies is difficult. DLD is both underfunded and under\u2010researched, resulting in relatively limited research investigating individuals with DLD. Engage with Developmental Language Disorder (E\u2010DLD) is a response to these considerations. E\u2010DLD is the first international participant database of those affected by DLD. Parents of children with DLD under 16 and young people and adults over 16 from anywhere in the world can sign up to be a part of the E\u2010DLD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>This paper aims to describe the families of children with DLD and adults with DLD in the database thus far.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods &amp; Procedures<\/jats:title><jats:p>E\u2010DLD members sign up via our website, reporting demographic characteristics as part of this procedure. We request all E\u2010DLD members subsequently fill in a yearly survey. The content of the yearly survey changes dependent on the age of the child, while the yearly survey for adults remains consistent. We measure a wide range of domains, such as speech and language therapy (SLT) support, school support, socialisation skills, and early developmental milestones for our youngest members, and health care support and mental well\u2010being measurements for our adults. We also collect parent and self\u2010reported reflections on strengths and challenges for the person with DLD using open\u2010ended questions and the Strengths and Difficulties Questionnaire.<\/jats:p><\/jats:sec><jats:sec><jats:title>Outcomes &amp; Results<\/jats:title><jats:p>The database currently consists of 196 parents of children with DLD and 20 individuals over the age of 16 with DLD or suspected DLD across a range of socioeconomic status (SES) backgrounds. Our initial results confirm that E\u2010DLD members meet the linguistic profile of DLD in relation to self\u2010 or parent\u2010rated language difficulties. Both children and adults show increased rates of psychosocial difficulties compared to established norms, consistent with past research on clinical samples of people with DLD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions &amp; Implications<\/jats:title><jats:p>The findings indicate that a participant database for DLD research is feasible and useful. The rates of emotional, behavioural and sleep difficulties among the child probands are higher than reported rates amongst typically developing children. Initial data indicate that adults with DLD have poorer well\u2010being than their peers. The E\u2010DLD is a useful collection of data on those affected by DLD and is a promising method for connecting people with DLD with academic researchers.<\/jats:p><\/jats:sec><jats:sec><jats:title>What This Paper Adds<\/jats:title><jats:sec><jats:title>What is already known on this subject<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Developmental Language Disorder (DLD) is characterised by expressive and\/or receptive language difficulties in the absence of another biomedical condition that could explain these difficulties. It is critically under\u2010researched and underfunded. As such, there is a lack of public awareness and difficulty recruiting sufficient sample sizes for DLD research studies.<\/jats:p><\/jats:list-item><\/jats:list><\/jats:p><\/jats:sec><jats:sec><jats:title>What this paper adds to existing knowledge<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Engage with Developmental Language Disorder (E\u2010DLD) is the first international participant database of individuals with DLD. This paper provides a preliminary report on the profile of linguistic and psychosocial skills among the individuals on the database, adding to current understanding of DLD across age groups.<\/jats:p><\/jats:list-item><\/jats:list><\/jats:p><\/jats:sec><jats:sec><jats:title>What are the potential or actual clinical implications of this work?<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Our aim is that the E\u2010DLD will provide much\u2010needed facilitation of research into DLD. E\u2010DLD will enable those with DLD and their families more readily to shape research agendas and to participate in studies that interest them. Families may be recruited into research that could directly translate to better clinical treatment of DLD. We also believe that the E\u2010DLD yearly survey holds potential to provide key information on the development and longitudinal experience of children and adults with DLD.<\/jats:p><\/jats:list-item><\/jats:list><\/jats:p><\/jats:sec><\/jats:sec>","DOI":"10.1111\/1460-6984.12835","type":"journal-article","created":{"date-parts":[[2022,12,24]],"date-time":"2022-12-24T12:18:07Z","timestamp":1671884287000},"page":"929-943","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["The Engage with Developmental Language Disorder (E\u2010DLD) project: Cohort profile"],"prefix":"10.1111","volume":"58","author":[{"given":"Michelle C.","family":"St Clair","sequence":"first","affiliation":[{"name":"University of Bath  Bath UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jasmine","family":"Horsham","sequence":"additional","affiliation":[{"name":"University of Bath  Bath UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vanessa","family":"Lloyd\u2010Esenkaya","sequence":"additional","affiliation":[{"name":"City, University of London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily","family":"Jackson","sequence":"additional","affiliation":[{"name":"Curtin University  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6172-6265","authenticated-orcid":false,"given":"Jenny","family":"Gibson","sequence":"additional","affiliation":[{"name":"University of Cambridge  Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suze","family":"Leit\u00e3o","sequence":"additional","affiliation":[{"name":"Curtin University  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1082-9501","authenticated-orcid":false,"given":"Nicola","family":"Botting","sequence":"additional","affiliation":[{"name":"City, University of London  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,12,24]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.3109\/17549500903104447"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511526831.006"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/0022-3999(94)90005-1"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1601-183X.2006.00232.x"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0015112"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/jcpp.12721"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0158753"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/20473869.2017.1283766"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjdp.12148"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0156678"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10802-015-0097-5"},{"key":"e_1_2_9_13_1","unstructured":"Burnley A. 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