Agenda

 Sunday, May 7, 2017

0715 Breakfast and registration
0800 Welcome: Goals and Scope of the meeting
Chris Forrest (Plastic Surgery, SickKids Hospital, Canada)
0810 Building on Consensus: Review consensus from the previous 2014 meeting
Corstiaan Breugem (Plastic Surgery, University Medical Centre, Netherlands)
0825 Identifying and Addressing Gaps: Where gaps exist and discuss scope and focus on what we need to evaluate and advance care in the 1st 5 years of life
Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA)
0840 Warm up with the interactive polling tools: case-based example

Considerations in Outcomes Research

Moderator: Howard Saal (Clinical Genetics, Cincinnati Children’s Hospital Medical Centre, USA)
0850 Start from the Beginning: Embryology of Robin sequence
Geoffrey Sperber (Embryologist, University of Alberta, Canada) (8 min presentation)
0900 Panel: Who is the population with RS? (5 min each followed by 15 min Q&A)

    1. Sarah Bowdin (Clinical Genetics, SickKids Hospital, Canada)
    2. Tiong Yang Tan (Developmental Biology Clinical Genetics, Murdoch Children’s Research Institute, Royal Children’s Hospital, Australia)
    3. Marilyn Jones (Genetics/Pediatrics, Rady Children’s Hospital, USA)

Scope: Defining the patient population and what we need to know for clinical care and research

    1. RS
    2. RS plus
    3. RS with a syndrome
0930 Outcomes: Calibration and Collaboration: Application to Research Efforts in RS
Ron Hathaway (Craniofacial Orthodontics, Americleft/ Cincinnati Children’s Hospital Medical Centre, USA)
0945 Discussion
0950 Incorporating Parent and the Patient Voices
(10 min presentations, followed by 10 min discussion)
The 1st few months of life and through childhood

  1. Yin Jones (Parent/Trustee, Cleft Lip and Palate Association, UK)
  2. Karine Latter (Nursing, Nottingham University Hospital, UK)
  3. Cindy Guernsey (Nursing, SickKids Hospital, Canada): Introducing Parents Leigh Riley & Claire Dickhoff
  4. Discussion
1030 Break

Airway Management

Speakers (8 min presentation followed by 2 min Q&A)
Moderator: Chris Forrest (Plastic surgery, SickKids Hospital, Canada
1100
  1. Airway physiology of newborns and unique considerations in RS
    Jon Skirko (Otolaryngology, Primary Children’s Hospital, USA)
  2. Airway endoscopy in RS
    Jonathan Perkins (Otolaryngology, Seattle Children’s Hospital, USA)
  3. Airway imaging and morphology of RS
    Derek Steinbacher/Liz Zellner (Plastic surgery, Yale Pediatric Specialty Centre, USA)
  4. Airway Research
    Carlton Zdanski (Otolaryngology, North Carolina Medical Centre, USA)
  5. The Difficult Airway, management in the OR
    Cengiz Karsli (Anaesthesia, SickKids Hospital, Canada)
1150 Moderator: Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA)
Multidisciplinary Panel: Airway management in the first few weeks. Neonatal case provided and analyzed by each member of the panel with Audience Polling/ Consensus. (5 min each)

  1. Michael Cunningham (Pediatrics, Seattle Children’s Hospital, USA)
  2. John Dahl (Otolaryngology, Indianapolis Riley Hospital for Children, USA)
  3. Linda Corel (Pediatric intensive care, Erasmus Medical Centre, Netherlands)
  4. Jesse Goldstein (Plastic surgery, Children’s Hospital of Pittsburgh, USA)
1220 BreakOut Session (30 minutes) What should we ideally be measuring for clinical care and research?
Leader: Chris Forrest (Plastic Surgery, SickKids Hospital, Canada) (with Speakers)
1250 Moderator: Chris Forrest (Plastic Surgery, SickKids Hospital, Canada)
Feedback and Deliverables (15 minutes): To be defined by Speakers/Panel:

  1. Data dictionary/data collection tools with airway evaluation metrics
  2. Additional airway obstruction metrics worthy of additional investigation
1305 Lunch

Medical and Sleep Interventions

Speakers (8 min presentation followed by 2 min Q&A)
1400 Moderator: Emily Gallagher (Pediatrics, Seattle Children’s Hospital, USA)

  1. Prone/Lateral positioning in Neonates and infants with RS
    Trisha Bannister (Nursing, Research, UK)
  2. Outpatient monitoring
    Noreen Clark (Nursing, Children’s Hospital of Los Angeles, USA)
  3. PSG (clinical and research applications)
    Joanna Maclean (Respiratory Sleep medicine, University of Alberta Children’s Hospital, Canada)
  4. PEB Plate with Velar Extension
    Christian Poets (Sleep/Neonatology, Tuebingen University Children’s Hospital, Germany)
  5. Nasopharyngeal airways
    Rona Slator (Plastic surgery, Birmingham Children’s Hospital, UK)
  6. Infants + Children, O2 + CPAP
    Sally Ward (Pediatric Pulmonology and Sleep medicine, Children’s Hospital Los Angeles, USA)
  7. Metabolics of RS
    Joel Fish (Plastic Surgery, SickKids Hospital, Canada)
1510 Moderator: Howard Saal (Clinical Genetics, Cincinnati Children’s Hospital Medical Centre, USA) (5 min each)
Multidisciplinary Panel: Protocols: Institutions present their protocols for Evaluation & Management; General & Focused protocols. (5 min each, followed by 10 min Q&A)

  1. Corstiaan Breugem (Plastic surgery, University Medical Centre, Netherlands)
  2. Chris Forrest (Plastic Surgery, SickKids Hospital, Canada)
  3. Mirko Gilardino (Plastic Surgery, Canada)
  4. Kelly Mabry (Craniofacial Speech Pathology, Feeding Protocol, Speech/Feeding, Connecticut Children’s Medical Centre,Hospital, USA)
  5. Jonathan Perkins (Otolaryngology, Seattle Children’s Hospital, USA)
  6. Rona Slator (Plastic surgery, Birmingham Children’s Hospital, UK)
  7. Veronique Abadie (Pediatrics, Hôpital Universitaire Necker Hospital, France)
1550 BreakOut Session (30 min) What should we ideally be measuring for clinical care and research?
Leader: Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA) (with Speakers)
1620 Moderator: Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA)
Feedback and Deliverables (10 min)

  1. Data dictionary/data collection tools with sleep and feeding metrics
  2. Additional health assessments metrics worthy of additional investigation
1630 Moderated Abstract Sessions (Groups 1,2)
Moderator: John Daskalogiannakis (Orthodontics, SickKids Hospital, Canada) (5 min presentations, followed by 5 min Q&A)
Abstract Group 1 (5 min/presenter, followed by 5 min group discussion Q&A)

  • Theme: Scientific Advances Abstract #17 Dysregulation of palatal shelf growth in the pathogenesis of Robin sequence
    Kai Yu, Seattle Children’s Research Institute, USA
  • Theme: Surgery Abstract #25 The association of MDO and palate morphology in patients with Robin sequence
    Daniele Duarte, Hospital de Clínicas de Porto Alegre, Brazil
  • Theme: Dental/Orthodontic Abstract #7 Longitudinal craniofacial growth in PRS and isolated cleft palate in comparison with unaffected children
    Fay Pereira, University of Toronto, Canada
  • Theme: Dental/Orthodontic Abstract #5 Permanent tooth agenesis in non-syndromic PRS: a systematic review and meta-analysis
    Gregory Antonarakis, Department of Orthodontics, Faculty of Dentistry, University of Geneva, Switzerland
  • Theme: Genetics Abstract #28 Cytogenomic findings in Pierre Robin sequence
    Temis Félix, Clinical Genetics Department, Rio Grande do Sul Federal University, Brazil

Abstract Group 2 (5 min/presenter, followed by 5 min group discussion)

  • Theme: Diagnosis Abstract #2 The Reliability of “Jaw-Index” or objectify micrognathia
    Yoline Mermans, Department of Plastic-Reconstructive, and Hand surgery, VU Medical Center, Netherlands
  • Theme: Scientific Advances Abstract #22 Correlation of 3D CT geometry measurements to surgical intervention in children with Pierre Robin sequence
    Carlton Zdanski, University of North Carolina, USA
  • Theme: Diagnosis/ Surgery Abstract #8 Defining mandibular morphology in Robin sequence: A matched case control study
    Srinivas Susarla, Division of Plastic Surgery, Seattle Children’s Hospital, USA
  • Theme: Diagnosis Abstract #34 Simple prediction of recurrent OSA after neonatal mandibular distraction osteogenesis
    Alison Kaye, Children’s Mercy Hospital – University of Missouri-Kansas City, USA
1735 Wrap Up
Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA) and Chris Forrest (Plastic Surgery, SickKids Hospital, Canada)

Monday, May 8, 2017

0730 Breakfast and registration

Surgery and RS

Speakers (8 min presentation followed by 2 min Q&A)
Moderator: Chris Forrest (Plastic surgery, SickKids Hospital, Canada)
0800 Airway Management

  1. Floor of Mouth Release
    Louise Caouette Laberge (Plastic surgery, CHU SainteJustine Hospital, Canada)
  2. Mandibular distraction
    Richard Hopper (Plastic surgery, Seattle Children’s Hospital, USA)
  3. MDO vs. TLA
    Roberto Flores (Plastic surgery, NYU Langone Medical Centre, USA)
  4. Tracheotomy
    Evan Propst (Otolaryngology, SickKids Hospital, Canada)
0840 Palate management

  1. Surgical Outcomes
    Maarten Koudstaal (Craniomaxillofacial surgery, Erasmus Medical Centre, Netherlands)
  2. Surgical Outcomes
    David Fisher (Plastic Surgery, SickKids Hospital, Canada)
  3. Speech Outcomes
    Simone Fischbach, Paula Klaiman (Speech Language Pathology, SickKids Hospital, Canada)
0910 Complications of surgery
Donald MacKay (Plastic Surgery, Hershey Medical Centre Penn State College of Medicine, USA)
0920 Late Surgery
Orthodontic Outcomes
Sunjay Suri (Orthodontics, SickKids Hospital, Canada)
0930 Multidisciplinary Panel: (5 min each)
Surgical Management: Case provided and analyzed by each member of the panel with Audience Polling/ Consensus.

  1. Arun Gosain (Plastic surgery, Lurie Children’s Hospital of Chicago, USA)
  2. Albert Woo (Plastic surgery, Brown University Hasbro Children’s Hospital, USA)
  3. Donald MacKay (Plastic surgery, Penn State College of Medicine Hershey Medical Centre, USA)
  4. Jon Skirko (Otolaryngology, Primary Children’s Hospital, USA)
1000 Break

Outcomes and Systematic Collection:
1025 Speakers (8 min presentation followed by 2 min Q&A):

  1. Registry and Linking Data Sources
    Scott Deacon (Orthodontics, University Hospital Bristol, Dental/Crane Database, UK)
  2. Long Term Surgical Outcomes
    Donald MacKay (Plastic Surgery, Penn State College of Medicine, USA)
  3. Neurodevelopmental Outcomes
    Marilyn Bull (Neurodevelopmental Pediatrics Pediatrics and Developmental medicine, Riley Hospital for Children at IU Health, Indiana University School of Medicine, USA)
1115 Multidisciplinary Panel: Examples of data sharing and collaboration in clinical care and research (5 min each):

  • Albert Oh (Plastic surgery, Children’s National Medical Centre Health System, USA)
  • Maarten Koudstaal (Craniomaxillofacial surgery, Erasmus Medical Centre, Netherlands)
  • Carrie Heike (Pediatrics, Seattle Children’s Hospital, USA)
1140 BreakOut Session: Brainstorming next steps in network and registry development
Leaders: Babette Siebold (Epidemiology, Seattle Children’s Craniofacial Center, USA) and Emily Ho (Clinical Research Plastic Surgery, SickKids Hospital, Canada)
Moderator: Scott Deacon (Orthodontics, University Hospitals Bristol, UK)
1210 Feedback and Deliverables

Tips for systematic data collection within a 1) clinical framework and a 2) research protocol
1230 Lunch
Moderator: Karine Latter (Nursing, Nottingham Children’s Hospital, UK) (5 min presentations followed by 5 min Q&A)
1330 Moderated Abstract Sessions (Groups 3-5)
Abstract Group 3 (5 minutes per presenter, followed by 5 min group discussion)

  • Theme: Treatment Algorithms Abstract #4 Robin sequence in Norway: 2 patients with tongue adhesion
    Hallvard Vindenes, Haukeland University Hospital, Norway
  • Theme: Treatment Algorithms Abstract #35 Operation of tongue protrusion is effective in Robin sequence
    Mikihiko Kogo, Osaka University, Cleft Centre, Japan
  • Theme: Treatment Algorithms Abstract #13 Treatment of patients with syndromic RS with the Pre-Epiglottic Baton Plate, a minimally invasive treatment option
    Silvia Müller-Hagedorn, Interdisciplinary Center for Craniofacial Malformations, Tuebingen University Hospital, Germany
  • Theme: Pediatrics Abstract #20 A guideline for the management of upper airway obstruction in Pierre Robin sequence
    Maha Mansour, The Welsh Centre for Cleft Lip & Palate, Morriston Hospital, UK

Abstract Group 4 (5 minutes per presenter, followed by 5 min group discussion)

  • Theme: Pediatrics Abstract #19 Endoscopic assessment of airway obstruction in isolated RS treated with orthodontic pre-epiglottic baton plate (PEBP)
    Cornelia Wiechers, Department of Neonatology, Tuebingen University Hospital, Germany
  • Theme: Diagnosis Abstract #24 Polysomnographic parameters can estimate clinical severity in patients with RS: A cohort nested crosssectional study
    Marcus Vinicius Collares, Hospital de Clínicas de Porto Alegre, Brazil
  • Theme: Surgery Abstract #31 Polysomnographic and endoscopic evaluation of children with isolated RS before and after palate repair
    Arturo Carpes and Cristiano Tonello, Department of Plastic Surgery, Faculty of Medicine, University of São Paulo, Brazil
  • Theme: Treatment algorithms Abstract #30 Comparison of the differential temporal evolution of objective sleep breathing parameters in nonsyndromic, syndromic and PRS patients with clefts in the West of Scotland
    Craig Russell, Cleft Service, Royal Hospital for Children, Glasgow, Scotland

Abstract Group 5 (5 minutes per presenter)

  • Theme: Surgery Abstract #21 Assessment of Health-Related Quality of Life in Robin sequence: A comparison of MDO and TLA
    Corstiaan Breugem, Department of Paediatric Plastic Surgery, Wilhelmina Children’s Hospital, Utrecht, Netherlands
  • Theme: Long term outcomes Abstract #6 Longitudinal speech and language data of children with RS: Results from a UK cleft centre
    Stephanie van Eeden, NHS Regional Cleft Palate Service Newcastle, UK
  • Theme: Long term outcomes Abstract #15 Do speech outcomes following cleft repair in children with RS vary with the severity of the neonatal airway obstruction?
    Rona Slator, West Midlands Cleft Team, Birmingham Children’s Hospital, UK
  • Theme: Miscellaneous Abstract #11 Hospitalized burden of treatment in PRS: A retrospective chart review of 119 patients
    Pinelopi-Kleio Palaska, SickKids Hospital, Canada
  • Theme: Pediatrics Abstract #14 Mortality in Robin sequence: Identification of Risk factors
    Robrecht Logjes, Division of Pediatric Plastic and Reconstructive Surgery University Medical Centre Utrecht, Wilhelmina Children’s Hospital Utrecht, Netherlands

Family and RS

Moderator: Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA)
1500 Ethics and Access to Quality Care (8 min presentation followed by 10 min Q&A)
Cassandra Aspinall (Social work, Seattle Children’s Hospital, USA)
1520 Optimizing Care Delivery, the Family Context (10 min presentation)
Yin Jones (Parent, CLAPA, UK)
1530 Multidisciplinary Panel: Assessing and Providing Support for the Whole Child (5 min each, followed by Q&A)

  1. Cassandra Aspinall (Social work, Seattle Children’s Hospital, USA)
  2. Farah Sheikh (Social work, SickKids Hospital, Canada)
  3. Cindy Guernsey (Nursing, SickKids Hospital, Canada)
  4. Sharon Samaan (Occupational Therapy, SickKids Hospital, Canada)
1555 Q&A
Moderator: Moderator: Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA) (5 min presentation each, followed by a 10 min Q&A)
1600 Multidisciplinary Panel: Considering Cost, Quality and Value in Care Delivery and Outcomes

  1. Reshma Amin (Respirology, SickKids Hospital, Canada)
  2. James Bradley (Plastic surgery, Temple University Hospital, USA)
  3. Marilyn Bull (Neurodevelopmental Pediatrics and Developmental medicine, Riley Hospital for Children at IU Health, Indiana University School of Medicine, USA)
1620 Q&A
1630 Wrap-up and Future Directions
Kelly Evans (Pediatrics, Seattle Children’s Hospital, USA) and Chris Forrest (Plastic Surgery, SickKids Hospital, Canada)