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 Table of Contents  
TASK FORCE REPORTS
Year : 2017  |  Volume : 4  |  Issue : 3  |  Page : 4-9

International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies 2017 Task Force Summary Reports


Clinical Professor, Plastic and Reconstructive Surgery, St. Louis University School of Medicine, St. Louis MO, USA

Date of Web Publication21-Nov-2017

Correspondence Address:
Jeffrey L Marsh
PO Box 23143, St. Louis MO 63156
USA
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jclpca.jclpca_93_17

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How to cite this article:
Marsh JL. International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies 2017 Task Force Summary Reports. J Cleft Lip Palate Craniofac Anomal 2017;4, Suppl S1:4-9

How to cite this URL:
Marsh JL. International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies 2017 Task Force Summary Reports. J Cleft Lip Palate Craniofac Anomal [serial online] 2017 [cited 2017 Dec 15];4, Suppl S1:4-9. Available from: http://www.jclpca.org/text.asp?2017/4/3/4/218903


  Task Force: Cleft Care Clinical Research Top


Anne Marie Kuijpers-Jagtman1,2

1Department of Dentistry, Radboud University Medical Center, Section of Orthodontics and Craniofacial Biology, Nijmegen, The Netherlands, 2Faculty of Dentistry, Universitas Indonesia, Jakarta, Indonesia

Address for correspondence:

Prof. Anne Marie Kuijpers-Jagtman,

Department of Dentistry, Radboud University Medical Center, Section of Orthodontics and Craniofacial Biology, Nijmegen, The Netherlands.

E-mail: orthodontie@radboudumc.nl

The Task Force Cleft Care Clinical Research of the International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies focused on identifying areas that need well-designed research to answer relevant clinical questions aiming at improving the quality of care of infants with orofacial clefts. Research into genetic aspects and development of outcome measures was excluded as other task forces were working on this topic.

The Task Force represented multiple disciplines (e.g., clinical psychology, orthodontics, pediatric audiology, three-dimensional imaging engineering, plastic and reconstructive surgery, and maxillofacial surgery). The members had a proven expertise in designing and conducting cleft palate research and had a clinical interest as well.

First, the Task Force searched the literature for initiatives that have been undertaken since 2012 to identify gaps of knowledge (last search on October 4, 2016). This information was used to establish a preliminary list of topics. Task Force members added additional uncertainties and unanswered questions from their own field. Subsequently, the Task Force prioritized the topics independently of each other based on the criterion that answering a certain research question should make a real difference for the patient. Rankings were converted to a group mean and ratified in a second round by E-mail.

The preliminary list of prioritized clinical research topics was discussed in a face-to-face meeting of the Task Force and a plenary session that was held during the 13th International Meeting for Cleft Lip and Palate and Related Craniofacial Anomalies in February 2017 in Chennai (India). Prioritized items were discussed and amended. The product of this Task Force is the Cleft Care Clinical Research Priority List with 48 research priorities. The Task Force recommends to use the Cleft Care Clinical Research Priority List for the research agenda 2017–2021 taking into consideration the specific regional context in different parts of the world.


  Task Force: Cleft Without Caries Top


E. Botzer, N. Kilpatrick, M. Murugan

Director of the Pediatric Dentistry Clinic at the Tel Aviv Sourasky Medical Center, Tel Aviv, Israel

Address for correspondence:

Dr. Eyal Botzer,

DMD / 30 Rainess street, Ramat Hasharon, 47277 Israel

E-mail: eyalbotzer@yahoo.com

Goal: That all children born with a cleft of the lip and/or palate (CL/P), irrespective of their place of birth, will not only be sufficiently dentally healthy to undergo all age appropriate surgical and orthodontic interventions but also will enjoy a standard of oral health that enhances their general health and well-being.

Objectives:

  • To establish an international network of oral health champions, committed to promoting oral health in children born with CL/P
  • To identify the barriers to optimizing oral health in all children born with a CL/P
  • To describe examples of practice, policy, or intervention that are making a difference to the oral health of children born with CL/P
  • To make recommendations for the development of oral health promotion and dental hygiene programs for children born with CL/P.


Conclusions: To keep the Task Force active under Dr. Muthu Murugan as Chairperson. Add more active members to the Task Force. Continue to develop the path toward achieving the goals for the next international cleft meeting.


  Task Force: Cleft Lip and Palate Epidemiology, Etiology, and Prevention Top


Peter A. Mossey

Department of Orthodontics, University of Dundee Dental School, Dundee, DD1 4HR, Scotland, UK

Address for correspondence:

Prof. Peter A. Mossey,

Dundee University Dental School, 1 Park Place, Dundee, DD1 4HR, Scotland, UK.

E-mail: p.a.mossey@dundee.ac.uk

Aims and Objectives: Mission – The primary aim of this Task Force will be to understand the etiopathogenesis of orofacial clefting (OFC) across different races and environments and to plan future research or interventions. This Task Force will consist of individuals from all over the world who have experience with investigation of either the epidemiology or the genetic and/or environmental factors causing OFC.

Objectives: The “Modus Operandum” of the Task Force group will be to meet at the ICC every 4 years and opportunistically in between but to use E-mail and social media to share ideas/collaborate/discuss relevant issues and to ensure our work is disseminated globally through publications and craniofacial meetings in member countries around the world.

Key Performance Indicators for Task Force Network:

  1. Build a database representing a functional working group that participates actively in a discussion forum and true collaborations
  2. Collection of data in a standardized way across the world and include DNA and tissue samples in biobanks using standardized protocols
  3. By discussion, collaboration, and dialog, the group will continuously evaluate research priorities and pursue cutting-edge research using interdisciplinary expertise
  4. Adopt a clear translational/implementation strategy that will aim to bring research findings into clinical practice
  5. Develop ethical policy acknowledging that while there will be differences in different countries, the basic principles are adhered to in conducting studies
  6. Ultimately, we aim to demonstrate using sound research methodologies, whether there is progress in achieving primary prevention within a generation in most countries in the world.


Task force future strategy – Summary:

  • Improve surveillance data quality and evidence synthesis
  • Ensure cleft lip and palate subphenotyping is standardized across all units
  • Define and quantify genetic and environmental attributable risks
  • Special emphasis on nutrition and environmental exposures in low- and middle-income countries (LMICs)
  • Utilize GWAS (common variants) and NGS (rare variants)
  • Epigenetics/Mendelian randomization/systems biology approaches
  • Identify the amendable risk factors (including consanguinity)
  • Smart technologically, for example, APPs and innovative analyses
  • Use the WHO GBD model (2012) adopting a health economics approach and assist with delivery of SDGs in LMICs
  • Address inequities using social determinants and the CRF model (in collaboration with other NCDs)
  • Global collaboration, large datasets, combined analyses
  • Drive the translational agenda, the details of which appear in Appendix IV of the full report (see link below).



  Task Force: Care of Infant with Cleft Top


Patricia Bannister, Trisha Bannister

Retired Consultant Nurse, North West Regional Cleft Unit, Royal Manchester Children's Hospital, Manchester, United Kingdom

Address for correspondence:

Patricia Bannister,

Pullum House, Beggars Ash. Ledbury, HR81LN, United Kingdom.

E-mail: trishabannister@btinternet.com

Assigned Objective: The purpose of these guidelines was to stimulate interest, understanding and discussion among clinicians, researchers, and professional organizations, and to draw attention to the crucial importance of the early management of the infants born with an oral cleft in low- and middle-income countries (LMICs). They are not intended to be country or site specific but rather provide a framework from which to work. The authors have attempted to be consistent with the World Health Organization (2012) recommendations in structure, with every effort made to use language which is simple and clear, provide recommendations that can be implemented and are achievable in various health-care settings, and utilize evidence-based practice of care where possible. Noncleft research is used where appropriate and reference is made to other established guidelines developed for high-resource settings.

Primary Aim: The aim of this study is to develop feeding and management principles and guidelines for government employees, health-care providers, and caregivers of infants born with oral clefts in LMICs and other low-resource settings from the time of diagnosis to 1 year of age.

Task Force Functioning: A working party was formed with membership, from a wide range of countries and representation from nursing, medicine, epidemiology, and the charitable sector all of whom work within this field of speciality. A monthly group Skype replaced initial telephone conferencing. A drop box was set up to keep some order in the plethora of information that we had gathered and includes relevant articles, lists of potential reviewers, agenda, and minutes of our meetings. Discussions took place as to the content and format of the proposed document. It became obvious quite early on that feeding could not be viewed in isolation. Infants born with oral clefts require complex care from the point of diagnosis to the end of the 1st year. Hence, a guidance model was constructed placing the child and family at the center of care. The subsequent domains, surrounding the child and family, embody the major elements considered important during the 1st postnatal year. Topics were shared equally among the group and writing commenced.

By the end of 2016, a draft document was completed and sent out for review.

  1. Guidelines on caring for children with an oral cleft in the 1st year of life in low-resource settings,
  2. Principles and guidelines for feeding, growth, early management, and resource provisioning for children born with oral clefts.


2017–2018: Over the next 4 years, the group has agreed to continue this work using Skype. Additional membership and collaboration with a number of International Organizations is being explored. Once the final document has been agreed, the task is to seek recognition and start the process of dissemination. A lack of available funding may prove a barrier to this, but if this document is recognized as a valuable contribution to care in LMICs, applications for financial support maybe more successful.


  Task Force: Global Cleft Team Network Top


Ronald R. Hathaway

Cincinnati Children's Hospital Medical Center, Division of Plastic and Reconstructive Surgery, Cincinnati, Ohio, USA

Address for correspondence:

Prof. Ronald R. Hathaway,

Professor of Surgery and Pediatrics, Director, Craniofacial and Surgical Orthodontics, Division of Craniofacial Plastic and Reconstructive Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, United States.

E-mail: . drhathaway54@gmail.com

Introduction: After the Cleft 2013 Congress, the International Confederation felt the need to reorganize the Beyond Eurocleft Task Force. Our group was renamed: Global Cleft Team Network Task Force. Gunvor Semb (Norway), Haydn Bellardie (Africa), Ron Hathaway (US), OP Kharbanda (India), Debbie Sell (UK), and Brian Sommerlad (UK) worked as a steering committee to take this group forward. We wanted to understand the barriers and obstacles which team and individual face, including the problem of resources, to try and improve care and outcomes for all.

Philosophy and Goals: Our Task Force consisted of individuals with experience in cleft outcome studies (e.g., Scandcleft, Eurocleft, and Americleft) but also those who have initiated, or intend to initiate, similar studies in other geographical areas. We had two fundamental aims. First, to help develop clinical expertise in all parts of the world. Second, to make recommendations for undertaking outcome studies in a broad range of different circumstances including the initiation of local intracenter studies, participation in intercleft studies, and for some participation in national and international studies. Our ultimate aim is to elevate the standards of care for all patients born with a cleft.

Recommendations: (1) Organization and focus – Although many tentative recommendations are listed in the full report, priorities must be made to focus the work of the Task Force going forward. It is suggested that a Task Force of 300+ members is inefficient and rather should be composed of 6-7 members, representing regions of the Confederation. The enthusiasm of other individuals signed on to date should be encouraged but perhaps as a “Network Partner/Participant” rather than as a formal Task Force member. (2) Priority A – Explore the feasibility and technology for developing a Global Cleft Team Registry which captures available cleft care resources and the content of current team capabilities. (3) Priority B – Establish a web-based Global Cleft Directory that is filterable for specific aims such as identifying teams, protocols, and individuals by discipline.


  Task Force: Holistic Outcomes in Cleft Top


Nichola Rumsey

Department of Health and Social Sciences, Centre for Appearance Research, Faculty of Health and Applied Sciences, UWE, Bristol BS16 1QY, UK

Address for correspondence:

Prof. Nichola Rumsey,

Department of Health and Social Sciences, Centre for Appearance Research, Faculty of Health and Applied Sciences, Frenchay Campus, UWE, Bristol, BS16 1QY, UK.

E-mail: nichola.rumsey@uwe.ac.uk

The overarching goal was to develop resources to facilitate the assessment of patient-centered outcomes for cleft care appropriate to all cultures. Comprising 68 members from 32 countries, members have a wide range of disciplinary backgrounds.

The key aims for the Task Force (2013–2017) and actions taken to address these were as follows:

(1) To identify an agreed focus for the measurement of patient-centered outcomes with cross-cultural relevance. A large-scale exercise was undertaken to develop a consensus framework of adjustment to cleft, with relevance to the broad range of cultures. This included literature reviews and a Delphi process conducted by E-mail and in face-to-face workshops. This framework guided subsequent tasks. (2) To develop a framework for measurement that could accommodate teams with varying level of resources and (3) to develop measures appropriate for patients and families with varying levels of literacy/education. A tiered approach to measurement was adopted, with three linked levels. Level 1 comprising simple “entry level” questions is designed to focus care provision and outcome measurement on the patient and family. Level 2 comprises additional questions and straightforward standardized scales with the aim of guiding clinical decision-making and assessing patient-centered outcomes. Tiers 1 and 2 allow for verbal administration of measures as an option to facilitate participation by those with lower levels of literacy or education. Level 3 provides a comprehensive set of standardized measures and questions for audit and research. All three tiers for children from birth - 7 years (through parental proxy) are complete. Future work will focus on measures for 8–12, 13–17, and 18 years plus. Training to promote patient-centered care and to support the use of the measures in clinical practice was delivered at a preconference workshop in Chennai. This training will be made available on the Task Force's website in due course. Additional training modules for cleft professionals have been developed in recent European union-funded programs. Links to these additional resources will also been given on the Task Force website.

The Future of the Task Force 2017–2021

Key tasks include the following:

  • Completion of the tiers and associated databases for children of all ages, adults, and parents
  • The development of a website through which the measures and training resources can be made available (funding achieved, May 2017)
  • To seek funding for a program of face-to-face training for Task Force members and their clinical networks.



  Task Force: Speech Top


Kathy L. Chapman, Zuzana Oravkinova1, Nancy J Scherer2, Elisabeth Willadsen3, Aparna V S4

Department of Communication Sciences and Disorders, University of Utah, Behavioral and Social Sciences, 390 S. 1530 E, Salt Lake City, UT 84112, 1Clinical speech-language Pathologist, Clinic of Plastic and Reconstructive Surgery, Cleft Palate Center University Hospital Bratislava, Ruzinovska 8, 821 06 Bratislava, Slovakia, 2Department of Speech and Hearing Science, Arizona State University, 975 S Myrtle Ave, Tempe, AZ 85287, 3University of Copenhagen, Department of Scandinavian Studies and Linguistics Emil Holms Kanal 2, 2300 Copenhagen S, Denmark, 4Speech-language Pathologist, Smiletrain Unit, Department of Maxillofacial Surgery, Bhagwaan Mahaveer Jain Hospital, Millers Road, Vasanthanagar, Bangalore, India

Address for correspondence:

Prof. Kathy L. Chapman,

Department of Communication Sciences and Disorders, University of Utah Behavioral and Social Sciences, 390 S. 1530 E., Salt Lake City, UT 84112

E-mail: . kathy.chapman@health.utah.edu

Objectives for the Task Force:

  1. To work toward assisting speech providers in achieving competency to assess and/or treat individuals with cleft palate
  2. To facilitate collaboration among professionals who are or have been providing speech-language pathology services or training community health-care workers in developing contexts and assist in developing services in those areas where none currently exists
  3. To continue the development and expansion of internationally applicable standardized “cleft” speech evaluation protocols.


Task Force Functioning and Activities: Membership lists compiled from the Orlando meeting of the Cleft 2014 Task Force (TF) were used for recruitment of TF members. Original TF members were contacted, and an effort was also made to reach out to Speech Language Pathologists (SLPs) from countries not yet represented in the current roster of participants. We identified five individuals (two from the US, two from Europe, and one from India) as the leadership team. Before the Cleft 2017 TF meeting, we had 39 members from 18 countries. Following the Congress in Chennai, India, additional members were recruited. The leadership team conducted several Skype call over the 4-year period. In addition, we were able to meet in person at the Congress in 2014 in Orlando, Florida, and at ACPA in Palm Springs (although only a small number of members attended this later meeting). We communicated with the membership primarily through E-mail. Our first task was to conduct a survey to obtain information about the practice patterns of the membership and also to determine what the membership wanted from the TF. We developed a series of resources in response to the survey and since the meeting in Chennai, have created a Facebook page as a way of communicating with the TF members. We developed a list of recommendations to be carried out over the next 4 years (see complete report).

Barriers: While there is a need for the TF, it is difficult to make progress without resources and better ways of communicating with the members. To read the complete final report of this TF including the references, tables, and figures, open the “TF” page of the International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies at http://www.iccpca.org/task_fors.php.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.




 

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