Programme - Down Syndrome Research Forum 2022

The Down Syndrome Research Forum 2022 is being hosted online. All times stated are UK (GMT/UTC/+00:00) time.

Click the programme headers to view the abstracts for each session.

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Day 1

09:00 Welcome

09:05 Invited Keynote

Chair: Sue Buckley

The Emerging Phenotype in Infants with Down Syndrome: Adaptations to Atypical Constraints

Hana D'Souza 1,2 & Dean D'Souza 3

  1. Department of Psychology & Newnham College, University of Cambridge
  2. School of Psychology, Cardiff University
  3. Department of Psychology, City, University of London

10:20 Break

10:35 Papers: AAC

Chair: Silvana Mengoni

Augmentative and Alternative Communication and Down Syndrome: A literature review and PhD overview

Elaine Scougal, PhD Student, University of Dundee

The Development of a Core Key Word Signing Vocabulary (Lámh) to Facilitate Communication with Children with Down Syndrome in the First Year of Mainstream Primary School in Ireland

Pauline Frizelle and Caoimhe Lyons, Department of Speech and Hearing Sciences, University College Cork, Ireland

The impact of embedding key word sign prompts in a shared book reading activity, on children with Down syndrome and their parents.

Pauline Frizelle, Rebecca Allenby, Elizabeth Hassett, Orlaith Holland, Eimear Ryan, and Ciara O'Toole; Department of Speech and Hearing Sciences, University College Cork, Ireland

11:45 Break

11:55 Papers: Services

Chair: Kelly Burgoyne

Developing an integrated NHS therapy pathway for supporting babies and young children with Down Syndrome

Lauren Newman, Kate Marshall and Karen Fisher - Speech and Language Therapists, Barts Health NHS Trust.

Speech and Language Therapy services for people with Down syndrome - the disparity between research and practice

Pauline Frizelle 1, Anna Ceroni 1, Lorna Bateman 2, Nicola Hart 3

  1. Department of Speech and Hearing Sciences, University College Cork, Republic of Ireland
  2. Psychology Department, Cork North Lee, Health Services Executive, Republic of Ireland
  3. Down syndrome Ireland, Dublin, Republic of Ireland

The new RCSLT Clinical Excellence Network (CEN) for Down syndrome

Becky Baxter, Chair (LETS Go)

12:55 Lunch

13:30 Papers: Interventions

Chair: Silvana Mengoni

Introducing PACT-DS: A Study to Adapt and Evaluate a Parent-Delivered Early Language Intervention for Children with Down Syndrome

Kelly Burgoyne 1, Emma Pagnamenta 2, and Vesna Stojanovik 2

  1. Manchester Institute of Education, University of Manchester, UK
  2. University of Reading, UK

Early Social Communication Intervention for Young Children with Down Syndrome: ASCEND study update

Vesna Stojanovik 1, Emma Pagnamenta 1, Sarah Sampson 1, Rachel Sutton 1, Kate Harvey 1, Victoria Joffe 2, Elena Pizzo 3, Sarah Rae 4, Nita Madhani 5

  1. University of Reading, School of Psychology and Clinical Language Sciences
  2. University of Essex
  3. University College London
  4. Oxford Healthcare Foundation Trust
  5. North East London Foundation Trust

Speech matters: a review of the evidence and practical implications

Sue Buckley, University of Portsmouth; Down Syndrome Education International

Down Syndrome Toolkit for Paediatric SLT: development, publications and feedback

Susan Chryssovergis Lancashire NHS Trust

14:55 Break

15:05 Papers: The Impacts of COVID-19

Chair: Kelly Burgoyne

Families with Down Syndrome: inclusion/exclusion and COVID-19

Andrea Tonner, University of Strathclyde

Anxiety and Worries of Individuals with Down Syndrome During the COVID-19 Pandemic: A Comparative Study in the UK

Sideropoulos, V. 1, Kye, H. 1, Dukes, D. 2,3, Samson, A. C. 2,4, Palikara, O. 5, & Van Herwegen, J. 1

  1. Department of Psychology and Human Development, UCL, Institute of Education, University College London, London, UK
  2. Institute of Special Education, University of Fribourg, Switzerland
  3. Swiss Center for Affective Sciences, University of Geneva, Switzerland
  4. Faculty of Psychology, Unidistance Suisse, Brig, Switzerland
  5. Department for Education Studies, University of Warwick, Coventry, UK

The lived experiences of new mothers accessing feeding support services for infants with Down syndrome during the COVID-19 pandemic

Laura Hielscher, Amanda Ludlow, Silvana Mengoni, Samantha Rogers and Karen Irvine (University of Hertfordshire)

16:15 Break

16:25 Papers: Brain Development

Chair: Vesna Stojanovik

Individualised assessment of regional brain volumes in neonates with Down syndrome reveals extreme deviation in white matter and cerebellum

Abi Fukami-Gartner 1,2, Ana A. Baburamani 1, Ralica Dimitrova 1,5, Prachi A. Patkee 1, Olatz Ojinaga Alfageme 1,3, Alexandra F. Bonthrone 1, Alena Uus 1,4, Emer Hughes 1, Maria Deprez 1,4, Serena J. Counsell 1, Joseph V. Hajnal 1,4, A. David Edwards 1,2, Jonathan O'Muircheartaigh 1,2,5, and Mary A. Rutherford 1,2

  1. Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, St. Thomas' Hospital, UK
  2. MRC Centre for Neurodevelopmental Disorders, King's College London, UK
  3. Centre for Brain and Cognitive Development, Birkbeck, University of London, UK
  4. Biomedical Engineering Department, School of Biomedical Engineering and Imaging Sciences, King's College London, UK
  5. Department of Forensic and Neurodevelopmental Science, Sackler Institute for Translational Neurodevelopment, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK

16:45 Closing Discussion

Day 2

09:00 Welcome

09:05 Symposium: Mathematical Development and Learning in Students with Down Syndrome

Chair: Kate Cain

Exploring relative strengths in Down's Syndrome: Spatial thinking and its role in mathematics

Katie A. Gilligan-Lee, Emily K. Farran, Su Morris; University of Surrey.

Teaching mathematics to students with Down syndrome

Erica Ranzato and Jo Van Herwegen Department of Psychology and Human Development, Institute of Education, IOE, UCL's Faculty of Education and Society, London.

Fundamental mathematical gaps for students with Down Syndrome

Karen McGuigan, Founder and Author of the Maths For Life programme

Improving mathematical outcomes in individuals with Down syndrome

Jo Van Herwegen Department of Psychology and Human Development, Institute of Education, IOE, UCL's Faculty of Education and Society, London.

10:35 Break

10:45 Papers: Education

Chair: Kelly Burgoyne

Inclusive Education Project UK, 2021-22

Chris Barnes, Inclusive Education Officer, Down Syndrome International

Developing a functional reading tool with teenagers and adults with Down syndrome

Pauline Frizelle 1, Sean O'Donovan 1, Lisa Martin 2, Nicola Hart 2

  1. Department of Speech and Hearing Sciences, University College Cork, Republic of Ireland
  2. Down Syndrome Ireland, Dublin, Republic of Ireland

The Importance of Parent-Teacher Communication

Fidelma Brady, Head of Education - Down Syndrome Ireland

Developing evidence-based inclusive education guidelines for early intervention and education

Sue Buckley 1,2

  1. University of Portsmouth, UK
  2. Down Syndrome Education International

12:15 Lunch

13:00 Papers: Interventions

Chair: Sue Buckley

Pediatric Assisted Cycle Therapy for Children with Down Syndrome: A Pilot Study for Product Development

Shannon D. R. Ringenbach, Jordan M. Santos, Jordan Stupka, Bryn Gunther, Sujan Parab, Carter Coray, & Kelley Baxter, Arizona State University

The power of music to change lives - Setting up an Inclusive Choir for Young People with/without additional needs

Jo Bryenton - Makaton Tutor, Rachel Whittaker - Choir Leader, Caroline Hall - Chair of Trustees, North Yorkshire Music Therapy Centre

Down Syndrome Ireland's Personal Development Programme

Aoife Gaffney, Head of Employment, Sinéad Flynn, Adult Education Officer, Down Syndrome Ireland

14:10 Break

14:20 Papers: Parent Experiences and Implications

Chair: Vesna Stojanovik

Nystagmus in Down syndrome

Maggie Woodhouse 1, Nicola Enoch 2

  1. University of Cardiff
  2. DSUK and Positive about Down syndrome (PADS)

Breastfeeding a baby with Down syndrome

Nicola Enoch, Positive about Down syndrome

15:00 Break

15:15 Papers: Teens and Adults

Chair: Kate Cain

Spatial abilities in Down syndrome: profiles and developmental trajectories

Su Morris, Emily K. Farran, Katie A. Gilligan-Lee; University of Surrey

Post High School Outcomes for Young Adults with Down Syndrome in the United States

Susan J. Loveall 1, Marie Moore Channell 2, Meghan Burke 2, Derek Rodgers 1

  1. University of Nebraska
  2. University of Illinois at Urbana-Champaign

Narrative language abilities in adults with Down syndrome: A remote online elicitation study using the Multilingual Assessment Instrument for Narratives (MAIN)

Elisa Mattiauda 1, Alexandra Perovic 1, Angela Hassiotis 2

  1. Division of Psychology and Language Sciences, University College London (UCL), UK
  2. Department of Psychiatry, University College London (UCL), UK

The Unique Contribution of Episodic Memory on Community Adaptive Behavior Skills in Young Adults with Down Syndrome

Chelsea Chen B.S., Kristina Baggett B.A., Gayle Faught Ph.D., Frances Conners Ph.D., The University of Alabama, Tuscaloosa, AL

16:35 General Discussion and Questions

Chair: Sue Buckley

17:00 Close