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2019 Down Syndrome Research Forum Programme

Day 1 - 16 September

10.00 - 10.30 - Registration

Coffee, tea and pastries

10.30 - Welcome to Forum

Introduction and housekeeping Jo Van Herwegen

Session 1: School age
10.50 - Early predictors of primary school outcomes in children with Down Syndrome

Hana D'Souza 1-3, Gaia Scerif 4, Michael S. C. Thomas3, & LonDownS Consortium

1 Department of Psychology, University of Cambridge

2 Newnham College, University of Cambridge

3 Centre for Brain and Cognitive Development, Birkbeck, University of London

4 Department of Experimental Psychology, University of Oxford

hd425@cam.ac.uk

11.10 - Mediated Learning Intervention for Primary School-aged Children with Down Syndrome

Vesna Stojanovik 1, Jo van Herwegen 2 and Vanessa Nichols 3

1 University of Reading; 2 University College London; 3 Breakthrough Learning

v.stojanovik@reading.ac.uk

11.30 School transition concerns from parents, professionals, and children with Down syndrome and Williams syndrome

Maria Ashworth 1, Elizabeth Burchell 2, Olympia Palikara 2, & Jo Van Herwegen 1

1 Psychology and Human Development, UCL, Institute of Education, London, UK

2 School of Education, University of Roehampton, London, UK.

Maria.ashworth@ucl.ac.uk

11.50 Anxiety and well-being in children with Downs Syndrome and Williams Syndrome

Elizabeth Burchell 1, Jo Van Herwegen 2, Maria Ashworth 2, & Olympia Palikara 1

1 School of Education, University of Roehampton, London, UK

2 Psychology and Human Development, UCL, Institute of Education, London, UK

Elizabeth.burchell@roehampton.ac.uk

12.10 - 13.10 Lunch
Session 2: Number Development
13.10 - Home Numeracy Environment of children with Down syndrome

Erica Ranzato 1, & Jo Van Herwegen 2

1 Department of Psychology, Kingston University London

2 Psychology & Human Development, UCL, Institute of Education

e.ranzato@kingston.ac.uk

13.30 Children with Down syndrome and their parents exploring number activities during free-play

Joanna Nye 1

1 Department of Psychology, University of Portsmouth, King Henry Building, King Henry I Street, Portsmouth, PO1 2DY, UK

joanna.nye@port.ac.uk

Session 3: Screening and ethics

13.50 Is there evidence to suggest that the NHS promote abortion of babies with Down's syndrome? A Critical Discourse Analysis

Georgia Zimmer

University of Leeds

georgia.zimmer@gmail.com

14.10 Mothers experience of antenatal screening, pre and post birth diagnoses, information and support

Nicola Enoch

Founder, Ups of Downs and Positive about Down syndrome

nicola_enoch@yahoo.co.uk

14.30 - 15.10 Tea and coffee

Session 4: Health
15.10 Supporting families of children with Down syndrome with feeding and eating: Perspectives from healthcare professionals

Silvana Mengoni 1, Charlotte Hamlyn-Williams 1 & Samantha Rogers 1

1 University of Hertfordshire, Hatfield, United Kingdom

s.mengoni@herts.ac.uk

15.30 A physiotherapy intervention

Donna Murphy

Chartered Physiotherapist, Carn Physiotherapy, 50 Slaughtniel Road Maghera Co Derry. BT465NJ

donna_mceld@yahoo.co.uk

15.50 Obstructive sleep apnoea contributes to executive function impairment in young children with Down syndrome

Anna Joyce 1, Heather Elphick 2, Michael Farquhar 3, Paul Gringras 3, Hazel Evans 4, Romola S Bucks 5 Jana Kreppner 6, Ruth Kingshott 2, Jane Martin 7, Janine Reynolds 2, Carla Rush 3, Johanna Gavlak 4, & Catherine M Hill 4, 8

1 Faculty of Humanities & Social Sciences, Regent's University

2 Sheffield Children's Hospital NHS Foundation Trust

3 Evelina London Children's Hospital, Guys & St Thomas's NHS Trust

4 Southampton Children's Hospital, Southampton University NHS Trust

5 School of Psychological Science, University of Western Australia

6 School of Psychology, University of Southampton

7 Southampton Biomedical Research Unit

8 School of Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton

a.joyce@ucl.ac.uk

16.10 Treatment for Obstructive Sleep Apnoea (OSA) in children with Down syndrome (DS): a systematic review

Rina Cianfaglione 1, Beth Stuart 2, Hazel J. Evans 3, & Catherine M Hill1 3

1 Clinical and Experimental Science, Faculty of Medicine, University of Southampton, UK

2 Primary Care Population Science, Faculty of Medicine, University of Southampton, UK

3 Southampton Children's Hospital, University Hospital Southampton NHS Trust, UK

R.Cianfaglione@soton.ac.uk

16.30 Discussion panel
17.00 End of Day 1

Optional Dinner to give an opportunity for more networking - details to be confirmed

Day 2 - 17 September

8.30 Coffee, tea, pastries
9.00 Introduction and housekeeping Jo Van Herwegen

Session 1: Early development

9.10 Early Brain Development in Down Syndrome

Prachi Patkee 1, Olatz Ojinaga Alfageme 1, 2, Ana Baburamani1, Emily Farran 3, Michael Thomas 2 & Mary Rutherford1.

1. Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, St.

Thomas' Hospital, London, SE1 7EH, UK

2. Centre of Brain and Cognitive Development, Department of Psychological Sciences, Birkbeck, University of London,

London, WC1E 7HX, UK

3. School of Psychology, University of Surrey, Guildford, Surrey, GU2 7XH, UK

prachi.patkee@kcl.ac.uk

9.30 Attention profiles in children with Down Syndrome and Williams Syndrome tested with the Early Child Attention Battery (ECAB)

Janette Atkinson 1, Fleur Corbett 2, Hana D'Souza 3, Oliver Braddick 4, & Dean D'Souza 2

1 University College London

2 Anglia Ruskin University

3 University of Cambridge

4 Oxford University

j.atkinson@ucl.ac.uk

9.50 Understanding face looking in infants/toddlers with Down syndrome in the context of naturalistic parent-child interaction

Hana D'Souza 1 - 3, Dean D'Souza 3, 4, Dan Brady 5, Rosanna Hurst 1, Adelaide Mettrick 1, Stefania Cangemi 4, Veronica Capaldo 1,Annette Karmiloff-Smith 3, Mark H. Johnson 1, Michael S. C. Thomas 3, & LonDownS Consortium

1 Department of Psychology, University of Cambridge

2 Newnham College, University of Cambridge

3 Centre for Brain and Cognitive Development, Birkbeck, University of London

4 Faculty of Science and Engineering, Anglia Ruskin University

5 School of Psychology and Clinical Language Sciences, University of Reading

hd425@cam.ac.uk

10.10 The Power of Parents: Understanding the Significance of Parent Child Interaction for Child Development in Down Syndrome

Desiree Grafton-Clarke, Elizabeth Nixon, Eleanor Molloy 2, 3 & Jean Quigley 1

1 Infant & Child Research Lab, School of Psychology, Trinity College Dublin

2 School of Medicine, Dept of Pediatrics, Trinity College Dublin.

3 National Children's Hospital, Tallaght University Hospital.

graftond@tcd.ie

10.30 - 11.10 Tea/ coffee break
Session 2: Co-morbidity
11.10 Exploring parents' experience of their child's dual-diagnosis of DS & ASD

Katie Lambert, Kate Gleeson and Emma Williams.

University of Surrey

k.lambert@surrey.ac.uk

11.30 Visual perception as a window into the nature of autistic-like trait expressions in children with Down syndrome

Jennifer M. Glennon 1, Hana D'Souza 2, Luke Mason, Annette Karmiloff-

Smith† & Michael S. C. Thomas 1

1, School of Psychology, Birkbeck, University of London, London UK

2, Department of Psychology, University of Cambridge

3, Newnham College, University of Cambridge

jglenn01@mail.bbk.ac.uk
Session 3: Post school intervention
11.50 'I can work' - a pilot project

Wendy Uttley

Down Syndrome Training & Support Service Ltd

office@downsyndromebradford.co.uk

Session 4: Speech and language

12.10 Evaluating a language intervention in the field

Nicola Hart, SLT, Head of Member Services, Down Syndrome Ireland

Nicola@downsyndrome.ie

12.30-13.30 Lunch
13.30 "People think if you can't talk, you don't understand": A qualitative insight into the factors underlying the factors underlying the communication experience of parents with children with Down Syndrome

Elaine Scougal, Nick Hopkins, & Annalu Waller.

University of Dundee

e.scougal@dundee.ac.uk

13.50 The nature of speech articulation difficulties in children with Down syndrome and relationships with language and reading ability

Rebecca Baxter 1, Kelly Burgoyne 2, Sue Buckley 3

1 University College London, UK

2 University of Manchester, UK

3 Down Syndrome Education International, UK

rbaxter@letsgouk.org

14.10 The effect of age on grammar comprehension in adults with Down syndrome

Alexandra Perovic 1 & Ken Wexler 2

1 University College London

2 Massachusetts Institute of Technology

a.perovic@ucl.ac.uk

14.50 Evaluating an early social communication intervention for young children with Down syndrome: a feasibility study

Vesna Stojanovik 1, Emma Pagnamenta 1, Victoria Joffe 2, Sarah Rae 3

1 University of Reading

2 City, University of London

3 Oxford Health NHS Foundation Trust

v.stojanovik@reading.ac.uk

15.10 Discussion and conclusions
15.30 Tea/coffee
16.00 Depart