Summary of the 3rd international symposium on arthrogryposis

Dahan‐Oliel, Noémi; Hall, Judith G.; Samargian, Ani; Sawatzky, Bonita; Bosse, Harold J. P. van

doi:10.1002/ajmg.c.31705

Cited by 10 publications

(7 citation statements)

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“…The results will provide healthcare users and providers with research-based, expert guidance to address physical, activity, participation and psychosocial needs of children with AMC. The project addresses one of the research and clinical priorities articulated during the 2 nd and 3 rd International Symposia on arthrogryposis [ 43 , 44 ], specifically the development of guidelines for clinical care of AMC. The symposia brought together an international group of clinical experts, patients and families.…”

Section: Discussionmentioning

confidence: 99%

Expert guidance for the rehabilitation of children with arthrogryposis: protocol using an integrated knowledge translation approach

et al. 2022

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Background Arthrogryposis multiplex congenita (AMC) is a group of rare congenital disorders characterized by multiple joint contractures present at birth. Contractures can affect different body areas and impact activities of daily living, mobility and participation. Although early rehabilitation is crucial to promote autonomy and participation in children with AMC, empirical evidence to inform best practice is scarce and clinical expertise hard to develop due to the rarity of AMC. Preliminary research involving stakeholders in AMC (youth with AMC, parents, and clinicians) identified priorities in pediatric rehabilitation. Scoping reviews on these priorities showed a lack of high quality evidence related to rehabilitation in AMC. The objective of this project is to provide rehabilitation expert guidance on the assessment and treatment of children with AMC in the areas of muscle and joint function, pain, mobility and self-care, participation and psychosocial wellbeing. Methods An integrated knowledge translation approach will be used throughout the project. Current rehabilitation practices in AMC will be identified using a clinician survey. Using the Grading of Recommendations, Assessment, Development and Evaluations framework (GRADE) approach, a panel of interdisciplinary expert clinicians, patient and family representatives, and researchers will develop expert guidance on the assessment and treatment for pediatric AMC rehabilitation based on findings from the scoping reviews and survey results. Consensus on the guidance statements will be sought using a modified Delphi process with a wider panel of international AMC experts, and statements appraised using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. Theoretical facilitators and barriers toward implementing clinical guidance into practice will be identified among rehabilitation clinicians and managers to inform the design of dissemination and implementation strategies. Discussion This multi-phase project will provide healthcare users and providers with research-based, expert guidance for the rehabilitation of children with AMC and will contribute to family-centered practice.

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Section: Discussionmentioning

confidence: 99%

Expert guidance for the rehabilitation of children with arthrogryposis: protocol using an integrated knowledge translation approach

et al. 2022

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“…The collection of articles spans three main themes: defining AMC; diagnosis and management; and clinical research. In an effort to better characterize and define AMC, the first theme includes manuscripts representing an international effort to define AMC (Dahan‐Oliel, Cachecho, et al, ), updates on disease coding (Bedard & Lowry, ), classification (Hall, Kimber, & Dieterich, ), and gene ontology (Kiefer & Hall, ). The second theme spans several manuscripts describing advances for diagnosis and management, including guidelines for early detection (Filges, Tercanli, & Hall, ), diagnostic workup (Dieterich et al, ), rehabilitation (Wagner et al, ), and orthopedic management (Hamdy et al, ; Oishi et al, ).…”

Section: Introductionmentioning

confidence: 99%

Collaborating to advance interdisciplinary care for individuals with arthrogryposis

Dahan‐Oliel

Hall

2019

American J of Med Genetics Pt C

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This Special Issue on Interdisciplinary Care in Arthrogryposis highlights a collection of articles spanning topics in interdisciplinary care, genetic discoveries, and clinical research. An international group of clinicians and researchers from various backgrounds who attended the "3rd International Symposium on Arthrogryposis", held in Philadelphia, September 24-26, 2018, were invited to contribute to this issue. The goal of the 2018 Symposium and of this Special Issue is to provide momentum to advancing evidence-based practice and research in arthrogryposis, by working collaboratively with adults and families of children with arthrogryposis, clinicians, and researchers. The contents of this issue cover a range of topics from defining and classifying arthrogryposis multiplex congenita to early detection, rehabilitation, and orthopedic management, advances in genetic pathways, patient registries, autopsy guidelines, and research findings in the pediatric and adult populations with arthrogryposis. We hope that this issue provides an overview as well as new knowledge on arthrogryposis to generate more conversations at the international level, and advance care and research for individuals with arthrogryposis.

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“…The International Symposium on Arthrogryposis was formed in 2007 to address these gaps in knowledge and consensus with the goal of organizing and cultivating research in the field of arthrogryposis. Since its formation, there have been three international conferences that have summarized the literature and expert opinion concerning the treatments of arthrogryposis 13 . However, there is still much to learn about this condition, and only a limited body of evidence is available to guide the counseling or treatment of patients.…”

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confidence: 99%

“…Since its formation, there have been three international conferences that have summarized the literature and expert opinion concerning the treatments of arthrogryposis. 13 However, there is still much to learn about this condition, and only a limited body of evidence is available to guide the counseling or treatment of patients.…”

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confidence: 99%

Arthrogryposis multiplex congenita: a 28‐year retrospective study

Wahlig

Poppino

et al. 2021

Develop Med Child Neuro

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Aim To identify all patients with arthrogryposis multiplex congenita presenting to a specialized pediatric orthopedic institution over a 28‐year period; classify them into three groups (general arthrogryposis not otherwise specified [NOS], amyoplasia, or distal arthrogryposis); report the frequency of various musculoskeletal features; and determine the rate of operative treatment. Method Patients with arthrogryposis under the age of 18 years who presented between 1990 and 2017 were included. Patients were placed into one of three groups based on clinical features and family history when available. Age of presentation, joint involvement, and utilization of surgical treatment were recorded. Results There were 417 patients in total (184 females, 233 males); 235 patients (56.4%) had general arthrogryposis NOS, 107 (25.7%) had amyoplasia, and 75 (18.0%) had distal arthrogryposis. Patients with amyoplasia presented at a younger age (median 4mo) than those with general arthrogryposis NOS (median 1y 3mo, p=0.005), and had a lower rate of spine involvement than patients with general arthrogryposis NOS (p=0.004) and distal arthrogryposis (p=0.023). The average number of surgeries across all patients was 1.9 (SD 2.2). Interpretation Pediatric patients with amyoplasia present to orthopedic care earlier and are less likely to have spine involvement than other forms of arthrogryposis. Multiple surgeries are common among all patients with arthrogryposis.

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Summary of the 3rd international symposium on arthrogryposis

Cited by 10 publications

References 11 publications

Expert guidance for the rehabilitation of children with arthrogryposis: protocol using an integrated knowledge translation approach

Expert guidance for the rehabilitation of children with arthrogryposis: protocol using an integrated knowledge translation approach

Collaborating to advance interdisciplinary care for individuals with arthrogryposis

Arthrogryposis multiplex congenita: a 28‐year retrospective study

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