1 November 2014 De Driehoek, Utrecht, The Netherlands - [PDF Document] (2024)

31 October-­‐ 1 November 2014

De Driehoek, Utrecht, The Netherlands

Welcome Dear Colleagues, Today we are pleased to welcome you in Utrecht, the Netherlands, for a meeting called: “Diagnosing, analyzing and treating Robin sequence:

A Consensus meeting”. After the successful 12’th International Congress on Cleft lip/palate and Related Craniofacial anomalies in Orlando, USA in May 2013, the idea arose to initiate a congress about Robin sequence. A group of enthusiastic physicians formed an organizing committee and subsequently, the first ever congress specific for Robin sequence, was initiated. Robin sequence or syndrome is one of the best-­‐known descriptions in our field. Despite our enthusiasm in trying to find better treatment options, it is well known that Robin sequence is still associated with significant morbidity and even mortality. There will be three main goals for this congress 1. Try to get consensus about the definition used 2. Hope we can get units to start collaboration for future studies. 3. Get an update on research specific for Robin sequence We hope this meeting will also provide an impetus for further research and make new friendships. Please also visit our beautiful city Utrecht if you have time (www.visit-­‐utrecht.com). Yours sincerely, Corstiaan Breugem Pediatric Plastic Surgeon On behalf of the organizing committee Marie-­‐José Van den Boogaard (Clinical Genetics) Sarah Haverkamp (Speech-­‐ and language pathology) Gijs van Haaften (Molecular Biology) Marvick Muradin, (Maxillofacial surgery) Gillean Nolst Trenite (Plastic Surgery) Emma Paes, (Plastic Surgery) Henriette Swanenburg de Veye (Psychology) Marjan Rebergen (Secretary)

Faculty: Veronique Abadie (Pediatrics, Paris, France) Els-­‐Marie Andersson (Orthodontics, Oslo, Norway) Margit Bacher (Orthontics, Tuebingen, Germany) Marie-­‐José Van den Boogaard (Clinical Genetics, Utrecht, The Netherlands) Corstiaan Breugem (Plastic Surgery, Utrecht, The Netherlands) Peter Don Griot (Plastic Surgeon, Amsterdam, The Netherlands) Kelly Evans (Pediatrics, Seattle, United States) Peter Farlie, (Research Institute, Melbourne, Australia) Brigitte Faroux (Pediatrics, Paris, France) Charles Filip (Plastic Surgeon, Oslo, Norway) Chris Gordon (Clinical Genetics, Paris, France) Gijs van Haaften (Molecular Biology, Utrecht, The Netherlands) Sarah Haverkamp (Speech-­‐ and language pathology, Utrecht, The Netherlands) Robert Havlik (Plastic Surgeon, Indianapolis, USA) Raoul Hennekam (Pediatrics Translat. Genetics, Academic Medical Center, Amsterdam, The Netherlands) Paul Hong (Ear-­‐Nose and Throat Surgeon, Halifax, Canada) Koen Joosten (Pediatrics, Rotterdam, The Netherlands) Mikihiko Kogo (Maxillofacial Surgery, Osaka, Japan) Petra Lemmers, (Pediatrics, Utrecht, The Netherlands) Marvick Muradin, (Maxillofacial surgery, Utrecht, The Netherlands) Jyotnsa Murthy (Plastic surgery, Chennai, India). Christian Poets (Pediatrics, Tuebingen, Germany) Howard Saal (Clinical Genetics, Cincinnati, USA) Rona Slator (Plastic Surgery, Birmingham, United Kingdom) Geoffrey Sperber (Faculty of Medicine & Dentistry, Edmonton, Canada) Sunjay Suri (Orthodontics, Sick Kids, Toronto, Canada) Henriette Swanenburg de Veye (psychology, Utrecht, the Netherlands) Marie-­‐Paule Vazquez (Plastic Surgery, Paris, France)

FRIDAY 31 OCTOBER 2014

07:45-­‐ 17:00 Registration 08:30 -­‐ Welcome: Introduction and aim Corstiaan Breugem A. Diagnosis: Part 1 (Chair: Howard Saal, Arnaud Picard) 08:40 -­‐ Embryological aspects Geoffrey Sperber Current understanding of embryology of the face with special reference to mandible and velopharyngeal musculature

08:55 -­‐ Current etiological overview Peter Farlie Summary of current developmental and genetic perspectives

09:10 -­‐ Pathogenetic approach Raoul Hennekam Mechanisms: malformations vs dysostosis vs sequence

09:25 -­‐ Literature review on current definitions Marie-­‐José van den Summary of and consensus on current definitions Boogaard 09:35 -­‐ Defining micrognathia Marvick Muradin How can we objectively describe the size of a mandible?

09:45 -­‐ Mandibular outgrowth controversy Sunjay Suri Summary of controversies and misunderstandings with regard to outgrowth of mandible in Robin sequence

09:55 -­‐ Discussion 10:25 -­‐ Defining glossoptosis Jyotsna Murthy How can we describe the glossoptosis encountered in Robin sequence?

10:35 -­‐ Discussion 10:50 – 11.10 Coffee A. Diagnosis: Part 2 (Chair: Christian Poets, Veronique Abadie, Sunjay Suri) 11:10 -­‐ Defining breathing problems (OSAS) Koen Joosten

Objective description of obstructive sleep apnea syndrome in Robin sequence

11:20 -­‐ Discussion 11:50 -­‐ Feeding problems Kelly Evans Describing feeding problems

12:00 -­‐ Discussion 12:20 -­‐ Cleft palate Mikihiko Kogo Describing the cleft palate 12:30 -­‐ Discussion 12:45 -­‐ 13:45 Lunch

Afternoon session B. Treatment (Chair: Paul Hong, Rona Slator, Lucienne Speleman) 13:45 -­‐ Necessary special investigations Christian Poets What investigations are ideal?

14:00 -­‐ Discussion 14:40 -­‐ Nasopharyngeal airway as a treatment option Rona Slator Advantages and disadvantages? 14:50 -­‐ Discussion

15:05 -­‐ Mandibular distraction as a treatment option Robert Havlik Advantages and disadvantages?

15:15 -­‐ Discussion 15:30 -­‐ Tracheostomy as a treatment option Paul Hong Advantages and disadvantages?

15:40 -­‐ Discussion 15:55 -­‐ 16:15 Coffee

16:15 -­‐ Tongue-­‐lip adhesion as a treatment option Peter Don Griot Advantages and disadvantages?

16:25 -­‐ Discussion 16:40 -­‐ CPAP as a treatment option Brigitte Fauroux Advantages and disadvantages?

16:50 -­‐ Discussion 17:00 -­‐ Palatal Plate therapy as a treatment option Margit Bacher / Advantages and disadvantages? Siegmar Reinert 17:15 -­‐ Discussion 17:20 – 18:30: Summary of morning session (Chair: Veronique Abadie, Corstiaan Breugem, Raoul Hennekam) “Plenary Discussion on defining Robin sequence” 19:30 Dinner

SATURDAY 1 NOVEMBER 2014 C. Treatment algorithms (Chair: Marvick Muradin, Jyotsna Murthy, Charles Filip) 09:00 Consequences of CO2 retention and hypoxemia in young children Petra Lemmers Algorithms in opting management strategies from 3 hospitals 09:20 Seattle (Kelly Evans) 09:30 Birmingham(Rona Slator) 09:40 Cincinnati (Howard Saal) 09:50 Discussion

10:40 – 11:00 Coffee D. Long-­‐term outcome (Chair: Kelly Evans, Marie-­‐José van den Boogaard) 11:00 -­‐ Cognition Veronique Abadie Long term outcome of cognitive function

11:15 -­‐ Discussion 11:25 -­‐ Speech and VPI Charles Filip Long term outcome of speech

11:40 -­‐ Discussion 11:50 -­‐ Teeth Els-­‐Marie Andersson Teeth anomalies and dental development in Robin sequence

12:05 -­‐ Discussion 12:15 – 13:15 Lunch E: Genetic analysis (Chair: Els-­‐Marie-­‐Andersson, Peter don Griot, Robert Havlik) 13:15 -­‐ Genetic analyses Chris Gordon What genetic analysis is mandatory in children with Robin sequence?

13:30 -­‐ Genetic diagnosis in a large Dutch cohort of Robin Hanneke Bassart sequence patients 13:35 -­‐ PRS – not just mandibular hypoplasia and cleft palate Rod Hunt 13:40 -­‐ Pierre Robin sequence in the Brazilian Database on Vera Lucia Gil-­‐da Silva-­‐Lopes orofacial clefts 13:45 -­‐ Testing for myopia in PRS Serryth Colbert 13:50 -­‐ Discussion

E. Open Papers 14:05-­‐15:30 Open session papers 14:05 -­‐ Thirty year management of Robin Management Marilyn Cohen 14:10 -­‐ Airway management in syndromic and non-­‐syndromic Rimante Seselgyte Robin sequence. 14:15 -­‐ Incidence and treatment of patients with Pierre Robin Hallvard Vindeness 14:20 -­‐ Outcome of mandibular distraction for the JM Shand management of neonates and infants with micrognathia and upper airway obstruction 14:25 -­‐ Respiratory support in children with Robin sequence. Manouk van Lieshout 14:30 -­‐ A multidisciplinary protocol to allow early palate EC Francis repair in Robin sequence. 14:35 Discussion 14:45 -­‐ Prevalence and patterns of permanent tooth agenesis Greg Antonarakis in white patients with non-­‐syndromic Robin sequence. 14:50 -­‐ Tooth agenesis in Robin sequence patients Daan van Nunen 14:55 -­‐ Damage to tooth buds after distraction osteogenesis Emma Paes 15:00 -­‐ Mandibular growth and it’s consequences in Marcus Collares patients with isolated Pierre Robin sequence analysis in mixed dentition 15:05 -­‐ Anesthetic neurotoxicity and the developing Jurgen de Graaf brain: an update 15:10 -­‐ Airway dysfunction in cleft palate and Robin David Orr sequence: lessions from comparative anatomy 15:15 -­‐ Obstructive sleep apnea in Robin sequence Andreaja Eberlinc 15:20 -­‐ Feeding protocol for infants with Pierre Robin Kelly Mabry

sequence following mandibular distraction. 15:25 -­‐ Parents’ experiences of Robin sequence: Karine Latter a UK multi-­‐centre perspective. 15:30 Discussion 15:45 – 16:00 Coffee 16:00-­‐16:30 Discussion (Chair: Kelly Evans, Howard Saal, Marie-­‐Paul Vazquez) 16:30 Closing remarks Corstiaan Breugem

Endorsem*nts: Austrian Cleft Palate Craniofacial Association American Cleft Palate Association American Association of Pediatrics Craniofacial Society of Great Britain and Ireland Canadian Society of Otolaryngology Dutch Cleft Palate Craniofacial Association Dutch Association of Oral and Maxilliofacial Surgery Dutch Association of Plastic Surgeons Dutch Society of Speech and Language pathology Dutch Society for Clinical Genetics European Society of Pediatric Otorhinolaryngology German Cleft Lip and Palate Craniofacial Association Indian Society Of Cleft Lip Palate & Craniofacial Anomalies.

Sponsors We are delighted by the sponsorships provided by the following companies. Please visit their stands during our breaks. Biomet

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KLS Martin:

Johnson and Johnson Ethicon

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ZonMW Social Program: Friday 31 October 2014: Congress dinner: “ Academiegebouw Utrecht” An exclusive Congress Dinner will be held in the impressive “ Academiegebouw Utrecht” next to the Dom Tower in the city center if Utrecht. This building is used by the University of Utrecht for ceremonial activities (such as PhD defences), but also for orations and congresses. The main part of the building dates back to 1462. Delegates that indicated during the registration process that they were coming to the diner are welcome to come. Address: Academiegebouw Domplein 29 3512 JE Utrecht Dress Code: Casual chic Time: 19:30 – 23:00

Map of Utrecht: