A Acrodisostose (ACRDYS) é uma doença rara que afeta o desenvolvimento dos ossos. Ela é caracterizada por: dedos das mãos e dos pés muito curtos; má-formação dos ossos das extremidades (como mãos e pés) e do rosto; nariz subdesenvolvido; e atraso no desenvolvimento.
Introdução
O que você precisa saber de cara
A Acrodisostose (ACRDYS) é uma doença rara que afeta o desenvolvimento dos ossos. Ela é caracterizada por: dedos das mãos e dos pés muito curtos; má-formação dos ossos das extremidades (como mãos e pés) e do rosto; nariz subdesenvolvido; e atraso no desenvolvimento.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 34 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 96 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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Genética e causas
O que está alterado no DNA e como passa nas famílias
Genes associados
2 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant.
Regulatory subunit of the cAMP-dependent protein kinases involved in cAMP signaling in cells
Cell membrane
Carney complex 1
CNC is a multiple neoplasia syndrome characterized by spotty skin pigmentation, cardiac and other myxomas, endocrine tumors, and psammomatous melanotic schwannomas.
Hydrolyzes the second messenger cAMP, which is a key regulator of many important physiological processes
Apical cell membraneCytoplasmMembraneCytoplasm, cytoskeletonCytoplasm, cytoskeleton, microtubule organizing center, centrosome
Variantes genéticas (ClinVar)
311 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 306 variantes classificadas pelo ClinVar.
Vias biológicas (Reactome)
16 vias biológicas associadas aos genes desta condição.
Diagnóstico
Os sinais que médicos procuram e os exames que confirmam
Tratamento e manejo
Remédios, cuidados de apoio e o que precisa acompanhar
Onde tratar no SUS
Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)
🇧🇷 Atendimento SUS — Acrodisostose
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Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.
Pesquisa ativa
Ensaios clínicos abertos e novidades científicas recentes
Ensaios em destaque
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Outros ensaios clínicos
Publicações mais relevantes
Genetic Heterogeneity Underlying Familial Short Stature.
Background and Clinical Significance: Familial short stature is a common reason for referral in clinical genetics. While often attributed to a single genetic cause, genetic heterogeneity can complicate diagnosis and management. This report describes a family in which three distinct pathogenic variants in SHOX, PDE4D and ACAN caused overlapping phenotypes of familial short stature. Case Presentation: Clinical, radiological and molecular data were collected retrospectively at the Reference Centre for Constitutional Bone Diseases at Montpellier University Hospital. Targeted gene panels, whole genome sequencing and Sanger sequencing were employed to identify pathogenic variants. Variant interpretation followed the guidelines of the American College of Medical Genetics. A pathogenic SHOX variant (c.452G>A; p.Ser151Asn) was identified in the proband and her mother, which is consistent with dyschondrosteosis. A de novo PDE4D variant (c.671C>T; p.Thr224Ile) was identified in a cousin presenting with syndromic acrodysostosis. An ACAN splice variant (c.6833-1G>A) was detected in several family members and is associated with short stature and skeletal anomalies. An individual carrying both the SHOX and ACAN variants exhibited a more severe phenotype, suggesting an additive effect. Conclusions: This case study highlights the importance of systematic molecular investigations in families with overlapping yet heterogeneous phenotypes. Comprehensive genetic familial analysis enables personalized care and accurate genetic counselling, particularly when multiple diagnoses coexist. A family history should not preclude molecular testing, since similar phenotypes can result from different genetic causes.
Case Report: The widening genetic and phenotypic spectrum of ultra-rare PDE4D-related acroscyphodysplasia.
Acroscyphodysplasia (ASD) is an ultra-rare skeletal dysplasia characterized by severe brachydactyly, metaphyseal scaphoid knee deformities, growth retardation, and intellectual disability. To date, only seven cases of ASD have been reported, all associated with missense variants in the PDE4D gene. We report a 7-year-old girl with ASD features, including midface hypoplasia, severe growth retardation (-4.81 Shwachman-Diamond syndrome (SDS) height), progressive postnatal development of "cup-shaped" knee metaphyses, and unilateral humeral bowing, demonstrating mosaic growth plate involvement. Whole-genome sequencing revealed a novel PDE4D missense variant (c.934C>T, p. Leu312Phe) in the upstream conserved region 2 (UCR2) autoinhibitory domain, which is distinct from known acrodysostosis-associated variants. Expanding the clinical and radiological characteristics, as well as the mutation spectrum of PDE4D-related ASD, is crucial for understanding syndrome variability, aiding in earlier detection, and improving recurrence risk assessment.
Recurrent Acrodysostosis-Related PKA RIα Mutant Reveals a Novel Mechanism of Aberrant PKA Deactivation.
Protein kinase A (PKA) is essential in converting extracellular signals into tightly regulated cellular responses controlling vital processes such as growth, development, and gene expression. Activation of PKA is controlled by the binding of cAMP to the regulatory subunit of PKA (R). Several mutations in the ubiquitous RIα isoform of R cause Acrodysostosis 1 (ACRO), a disease characterized by resistance to thyroid-stimulating and parathyroid hormones leading to severe congenital malformations. This work examines the recurrent R366X truncation ACRO mutant, which exhibits severe PKA hypoactivation due to loss of sensitivity to cAMP and the impairment of allosteric networks. The R366X RIα mutant has been previously studied via X-ray crystallography, but the crystal structure only captured the inhibited state and showed minimal difference from the wild type structure. Additionally, previous studies only examined the effects of ACRO mutants on the activation cycle of PKA (i.e. sensitivity to cAMP binding). Here we focus on the less understood signal termination cycle. We hypothesize that R366X acts by perturbing dynamic intermediates relevant to the PKA deactivation cycle, which are not fully recapitulated by static structures. To test our hypothesis, we combined low- and high-resolution approaches for probing protein-ligand binging, mutant stability, and identifying regions exhibiting aberrant allosteric behaviors. Based on our results, we propose a novel mechanism whereby R366X not only impairs physiological PKA activation but also accelerates PKA deactivation by increasing the rate of phosphodiesterase-catalyzed cAMP hydrolysis to 5'-AMP. Our studies shed new light on the current understanding of PKA dysregulation and ACRO's molecular etiology, outlining a multi-resolution experimental design which is transferable to other ACRO mutants.
Unveiling the Phenotypic Spectrum of Miller Syndrome: A Systematic Review.
Miller syndrome is an extremely rare condition in the group of facial dysostosis syndromes. These syndromes have great phenotypic overlap and variability, even within families. To facilitate the differentiation of Miller syndrome from related facial dysostosis syndromes, such as Treacher Collins and Nager syndrome, this study aims to provide an overview of the phenotypic spectrum of the syndrome. A systematic literature search of Embase, MEDLINE/PubMed, Web of Science, and CINAHL was conducted until November 2024. Case reports and case series of patients with a clinical or genetic diagnosis of Miller syndrome in all languages were included. The quality of the included reports was assessed using the Joanna Briggs Institute critical appraisal tool and the Fichas de Lectura Critica 3.0 web application. In total, 44 cases of Miller syndrome were found, with only 18.2% having genetic confirmation. Craniofacial anomalies were prominent, including midface hypoplasia (72.7%) and micrognathia (75.0%), orofacial clefts (77.3%), eyelid anomalies (70.5%), and external ear anomalies (63.6%). Limb anomalies were present in all cases, primarily involving the hands (95.5%), forearms (52.3%), and feet (90.9%). Anomalies in other extracraniofacial tracts were also reported. Despite limitations, including limited genetic confirmation and reliance on literature, this study provides valuable insights into the phenotypic spectrum of Miller syndrome. Efforts for genetic confirmation, international collaboration, and comprehensive reporting are essential to advance research and care for rare conditions like Miller syndrome. Therefore, a detailed checklist for phenotypic evaluation in Miller syndrome cases is provided in this study.
A rare case of acrodysostosis type 2 with PDE4D mutation in a young female: a case report.
Acrodysostosis (ADO) is a rare form of peripheral dysostosis characterized by skeletal malformations, growth delays, short stature, and distinctive facial features caused by in part by underdeveloped (hypoplasia) of facial bones. Skeletal dysplasia is specific and includes disproportional short stature with short extremities and brachydactyly, multiple cone-shaped epiphyses, scoliosis or kyphosis with spinal stenosis, and advanced bone maturation. Herein, we are highlighting a case that presented with clinical features such as brachydactyly, delayed milestone, growth delay, muscle weakness and nasal hypoplasia. Patient genetic testing was in line with the diagnosis of acrodysostosis. The clinic-radiological correlation was also suggestive of the rare diagnosis of ADO.
Publicações recentes
Genetic Heterogeneity Underlying Familial Short Stature.
Case Report: The widening genetic and phenotypic spectrum of ultra-rare PDE4D-related acroscyphodysplasia.
Recurrent Acrodysostosis-Related PKA RIα Mutant Reveals a Novel Mechanism of Aberrant PKA Deactivation.
Unveiling the Phenotypic Spectrum of Miller Syndrome: A Systematic Review.
Brachydactylia in acrodysostosis.
📚 EuropePMC83 artigos no totalmostrando 63
Genetic Heterogeneity Underlying Familial Short Stature.
Diagnostics (Basel, Switzerland)Case Report: The widening genetic and phenotypic spectrum of ultra-rare PDE4D-related acroscyphodysplasia.
Frontiers in medicineRecurrent Acrodysostosis-Related PKA RIα Mutant Reveals a Novel Mechanism of Aberrant PKA Deactivation.
Journal of molecular biologyUnveiling the Phenotypic Spectrum of Miller Syndrome: A Systematic Review.
The Journal of craniofacial surgeryBrachydactylia in acrodysostosis.
QJM : monthly journal of the Association of PhysiciansA rare case of acrodysostosis type 2 with PDE4D mutation in a young female: a case report.
Oxford medical case reportsPhosphodiesterase 4D activity in acrodysostosis-associated neural pathology: too much or too little?
Brain communicationsImpaired cAMP processivity by phosphodiesterase-protein kinase A complexes in acrodysostosis.
Frontiers in molecular biosciencesEvaluation of polysomnography findings in children with genetic skeletal disorders.
Journal of sleep researchGrowth patterns and outcomes of growth hormone therapy in patients with acrodysostosis.
Journal of endocrinological investigationLaminectomy as treatment for abrupt neurological decline in acrodysostosis: A case report.
Surgical neurology internationalAcrodysostosis and pseudohypoparathyroidism (PHP): adaptation of Japanese patients with a newly proposed classification and expanding the phenotypic spectrum of variants.
Endocrine connectionsGαs-Protein Kinase A (PKA) Pathway Signalopathies: The Emerging Genetic Landscape and Therapeutic Potential of Human Diseases Driven by Aberrant Gαs-PKA Signaling.
Pharmacological reviewsMolecular diagnosis in a cohort of 114 patients with rare skeletal dysplasias.
American journal of medical genetics. Part C, Seminars in medical genetics[Respiratory impairment in a patient with acrodysostosis: A rare association of an uncommon pathology].
Archivos argentinos de pediatriaNoncanonical protein kinase A activation by oligomerization of regulatory subunits as revealed by inherited Carney complex mutations.
Proceedings of the National Academy of Sciences of the United States of AmericaSleep-disordered breathing and its management in children with rare skeletal dysplasias.
American journal of medical genetics. Part AA novel variant in the PDE4D gene is the cause of Acrodysostosis type 2 in a Lithuanian patient: a case report.
BMC endocrine disordersUNEXPECTED HYPERPARATHYROIDISM IN A PATIENT WITH ACRODYSOSTOSIS.
AACE clinical case reportsShortening Scarf Osteotomy for Macrodactyly and Valgus of the Hallux in Acrodysostosis Lesser Toes Brachydactyly.
Foot & ankle specialistPseudohypoparathyroidism, acrodysostosis, progressive osseous heteroplasia: different names for the same spectrum of diseases?
EndocrineFourteen-year follow-up of a child with acroscyphodysplasia with emphasis on the need for multidisciplinary management: a case report.
BMC medical genetics[Genetic analysis of a child with acrodysostosis type 2].
Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical geneticsDominant-Negative Attenuation of cAMP-Selective Phosphodiesterase PDE4D Action Affects Learning and Behavior.
International journal of molecular sciencesNovel progressive acrodysostosis-like skeletal dysplasia, cerebellar atrophy, and ichthyosis.
American journal of medical genetics. Part ALegg-Calve-Perthes disease in an 8-year old girl with Acrodysostosis type 1 on growth hormone therapy: case report.
International journal of pediatric endocrinologyRecommendations for Diagnosis and Treatment of Pseudohypoparathyroidism and Related Disorders: An Updated Practical Tool for Physicians and Patients.
Hormone research in paediatricsGNAS, PDE4D, and PRKAR1A Mutations and GNAS Methylation Changes Are Not a Common Cause of Isolated Early-Onset Severe Obesity Among Finnish Children.
Frontiers in pediatrics[Heterozygous variation identified in PDE4D gene caused acrodysostosis].
Zhonghua er ke za zhi = Chinese journal of pediatricsA novel de novo PDE4D gene mutation identified in a Chinese patient with acrodysostosis.
Genesis (New York, N.Y. : 2000)Identification of novel pathogenic variants and features in patients with pseudohypoparathyroidism and acrodysostosis, subtypes of the newly classified inactivating PTH/PTHrP signaling disorders.
American journal of medical genetics. Part AKBG syndrome presenting with brachydactyly type E.
BoneParathyroid hormone resistance syndromes - Inactivating PTH/PTHrP signaling disorders (iPPSDs).
Best practice & research. Clinical endocrinology & metabolismInactivating PTH/PTHrP Signaling Disorders.
Frontiers of hormone research[Implication in Paediatrics of the First International Consensus Statement for the Diagnosis and management of pseudohypoparathyroidism and related disorders].
Anales de pediatriacAMP-dependent activation of the Rac guanine exchange factor P-REX1 by type I protein kinase A (PKA) regulatory subunits.
The Journal of biological chemistryPseudohypoparathyroidism.
Endocrinology and metabolism clinics of North AmericaExpanding the phenotypic spectrum of variants in PDE4D/PRKAR1A: from acrodysostosis to acroscyphodysplasia.
European journal of human genetics : EJHGDiagnosis and management of pseudohypoparathyroidism and related disorders: first international Consensus Statement.
Nature reviews. EndocrinologyMultiple hormone resistance and alterations of G-protein-coupled receptors signaling.
Best practice & research. Clinical endocrinology & metabolismCurrent Nomenclature of Pseudohypoparathyroidism: Inactivating Parathyroid Hormone/Parathyroid Hormone-Related Protein Signaling Disorder.
Journal of clinical research in pediatric endocrinologyRadicular claudication revealing possible acrodysostosis: A case report.
Annals of physical and rehabilitation medicineMutations causing acrodysostosis-2 facilitate activation of phosphodiesterase 4D3.
Human molecular geneticsEndocrinological and phenotype evaluation in a patient with acrodysostosis.
Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric EndocrinologyPhenotypic Variability in a Family with Acrodysostosis Type 2 Caused by a Novel PDE4D Mutation Affecting the Serine Target of Protein Kinase-A Phosphorylation.
Journal of clinical research in pediatric endocrinology[Regulatory mechanism of calcium metabolism.].
Clinical calciumTwo cases of Legg-Perthes and intellectual disability in Tricho-Rhino-Phalangeal syndrome type 1 associated with novel TRPS1 mutations.
American journal of medical genetics. Part AModulation of signaling through GPCR-cAMP-PKA pathways by PDE4 depends on stimulus intensity: Possible implications for the pathogenesis of acrodysostosis without hormone resistance.
Molecular and cellular endocrinologyStructure of a PKA RIα Recurrent Acrodysostosis Mutant Explains Defective cAMP-Dependent Activation.
Journal of molecular biology[Genes in the cAMP pathway causing skeletal dysplasia with or without hormonal resistance].
Biologie aujourd'huiKnock-In of the Recurrent R368X Mutation of PRKAR1A that Represses cAMP-Dependent Protein Kinase A Activation: A Model of Type 1 Acrodysostosis.
Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral ResearchFrom pseudohypoparathyroidism to inactivating PTH/PTHrP signalling disorder (iPPSD), a novel classification proposed by the EuroPHP network.
European journal of endocrinology[Pathophysiology of Hypoparathyroidism].
Clinical calciumPseudohypoparathyroidism and Gsα-cAMP-linked disorders: current view and open issues.
Nature reviews. EndocrinologyScreening of PRKAR1A and PDE4D in a Large Italian Series of Patients Clinically Diagnosed With Albright Hereditary Osteodystrophy and/or Pseudohypoparathyroidism.
Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral ResearchCorrigendum: Impact of kinase activating and inactivating patient mutations on binary PKA interactions.
Frontiers in pharmacologyFunctional Characterization of PRKAR1A Mutations Reveals a Unique Molecular Mechanism Causing Acrodysostosis but Multiple Mechanisms Causing Carney Complex.
The Journal of biological chemistryImpact of kinase activating and inactivating patient mutations on binary PKA interactions.
Frontiers in pharmacologyRACK1 and β-arrestin2 attenuate dimerization of PDE4 cAMP phosphodiesterase PDE4D5.
Cellular signallingMultiple hormonal resistances: Diagnosis, evaluation and therapy.
Annales d'endocrinologiePseudohypoparathyroidism type Ib in 2015.
Annales d'endocrinologieAcrodysostosis: A new form of pseudohypoparathyroidism?
Annales d'endocrinologieEngineered stabilization and structural analysis of the autoinhibited conformation of PDE4.
Proceedings of the National Academy of Sciences of the United States of AmericaAssociações
Organizações que acompanham esta doença — pra ter apoio e orientação
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Comunidades
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Referências e fontes
Bases de dados externas citadas neste artigo
Publicações científicas
Artigos indexados no PubMed ligados a esta doença no grafo RarasNet — título, periódico e PMID direto da fonte, sem intermediação de IA.
- Genetic Heterogeneity Underlying Familial Short Stature.
- Case Report: The widening genetic and phenotypic spectrum of ultra-rare PDE4D-related acroscyphodysplasia.
- Recurrent Acrodysostosis-Related PKA RIα Mutant Reveals a Novel Mechanism of Aberrant PKA Deactivation.
- Unveiling the Phenotypic Spectrum of Miller Syndrome: A Systematic Review.
- A rare case of acrodysostosis type 2 with PDE4D mutation in a young female: a case report.
- Brachydactylia in acrodysostosis.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:950(Orphanet)
- MONDO:0019797(MONDO)
- GARD:5724(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q4357287(Wikidata)
Dados compilados pelo RarasNet a partir de fontes abertas (Orphanet, OMIM, MONDO, PubMed/EuropePMC, ClinicalTrials.gov, DATASUS, PCDT/MS). Este conteúdo é informativo e não substitui avaliação médica.
Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar
