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 Scerif4, 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 Stojanovik1, Jo van Herwegen2 and Vanessa Nichols3

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 Ashworth1, Elizabeth Burchell2, Olympia Palikara2, & Jo Van Herwegen1

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 Burchell1, Jo Van Herwegen2, Maria Ashworth2, & Olympia Palikara1

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 Enviroment of children with Down syndrome

Erica Ranzato1, & Jo Van Herwegen2

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 Nye1

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 Mengoni1, Charlotte Hamlyn-Williams1 & Samantha Rogers1

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 Joyce1, Heather Elphick2, Michael Farquhar3, Paul Gringras3, Hazel Evans4, Romola S Bucks5 Jana Kreppner6, Ruth Kingshott2, Jane Martin7, Janine Reynolds2, Carla Rush3, Johanna Gavlak4, & Catherine M Hill4,8

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 Cianfaglione1, Beth Stuart2, Hazel J. Evans3, & Catherine M Hill13

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 Patkee1, Olatz Ojinaga Alfageme1,2, Ana Baburamani1, Emily Farran3, Michael Thomas2 & 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 Atkinson1, Fleur Corbett2, Hana D'Souza3, Oliver Braddick4, & Dean D'Souza2

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'Souza1 -3, Dean D'Souza3, 4, Dan Brady5, Rosanna Hurst1, Adelaide Mettrick1, Stefania Cangemi4, Veronica Capaldo1,Annette Karmiloff-Smith3, Mark H. Johnson1, 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 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 Molloy2,3 & Jean Quigley1

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. Glennon1, Hana D'Souza2, Luke Mason, Annette Karmiloff-

Smith† & Michael S. C. Thomas1

1, School of Psychology, Birkbeck, University of Londen, Londen 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 comunication 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 Burgoyne2, Sue Buckley3

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 Perovic1 & Ken Wexler2

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 Stojanovik1, Emma Pagnamenta1, Victoria Joffe2, Sarah Rae3

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