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Gigantismo infantil, forma familiar
ORPHA:300373CID-10 · E22.0CID-11 · 5A60.0OMIM 300942DOENÇA RARA

Os elefantes são grandes mamíferos da família Elephantidae e da ordem Proboscidea. Atualmente, são reconhecidas três espécies: o elefante-da-savana, o elefante-da-floresta-africana e o elefante asiático. Já teve uma suposta espécie de Loxodonta, que é o Loxodonta Pumilio, mas era apenas um Loxodonta Cyclotis confundido. Os elefantes estão distribuídos por toda a África Subsaariana, Sul da Ásia e Sudeste Asiático. Elephantidae é a única família sobrevivente da ordem Proboscidea, e outros membros da ordem, já extintos, incluem Deinotheriidae, Gomphotheriidae, mamutes e mastodontes.

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Introdução

O que você precisa saber de cara

📋

Gigantismo infantil familiar é uma condição rara ligada ao cromossomo X, caracterizada por alta estatura, distensão abdominal, diabetes insipidus e aumento da prolactina. Apresenta traços faciais grosseiros, acantose nigricans e cefaleia, com herança dominante ligada ao X.

Pesquisas ativas
1 ensaio
1 total registrados no ClinicalTrials.gov
Publicações científicas
64 artigos
Último publicado: 2026 Apr 8

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
<1 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
33
pacientes catalogados
Início
Childhood
+ infancy, neonatal
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: E22.0
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

Preparando trilha educativa...

Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Partes do corpo afetadas

📏
Crescimento
13 sintomas
🦴
Ossos e articulações
5 sintomas
🧠
Neurológico
3 sintomas
❤️
Coração
2 sintomas
👁️
Olhos
2 sintomas
🦷
Dentes
1 sintomas

+ 15 sintomas em outras categorias

Características mais comuns

90%prev.
Alta estatura
Muito frequente (99-80%)
90%prev.
Aumento da concentração circulante de prolactina
Muito frequente (99-80%)
90%prev.
Aumento da concentração circulante de fator de crescimento semelhante à insulina 1
Muito frequente (99-80%)
90%prev.
Concentração elevada de hormônio do crescimento circulante
Muito frequente (99-80%)
90%prev.
Morfologia anormal da glândula pituitária
Muito frequente (99-80%)
55%prev.
Anormalidade da morfologia do quiasma óptico
Frequente (79-30%)
45sintomas
Muito frequente (5)
Frequente (12)
Ocasional (17)
Muito raro (2)
Sem dados (9)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 45 características clínicas mais associadas, ordenadas por frequência.

Alta estaturaTall stature
Muito frequente (99-80%)90%
Aumento da concentração circulante de prolactinaIncreased circulating prolactin concentration
Muito frequente (99-80%)90%
Aumento da concentração circulante de fator de crescimento semelhante à insulina 1Increased circulating insulin-like growth factor 1 concentration
Muito frequente (99-80%)90%
Concentração elevada de hormônio do crescimento circulanteElevated circulating growth hormone concentration
Muito frequente (99-80%)90%
Morfologia anormal da glândula pituitáriaAbnormality of the pituitary gland
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico64PubMed
Últimos 10 anos56publicações
Pico201612 papers
Linha do tempo
2026Hoje · 2026📈 2016Ano de pico🧪 2022Primeiro ensaio clínico
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

🧬

Nenhum gene associado encontrado

Os dados genéticos desta condição ainda estão sendo catalogados.

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Gigantismo infantil, forma familiar

🗺️

Selecione um estado ou use sua localização para ver resultados.

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

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1 pesquisa recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

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Publicações mais relevantes

Timeline de publicações
62 papers (10 anos)
#1

Distinguishing benign from pathogenic duplications involving GPR101 and VGLL1-adjacent enhancers in the clinical setting with the bioinformatic tool POSTRE.

NPJ genomic medicine2026 Jan 15

Structural variants (SVs) that disrupt topologically associating domains can cause disease by rewiring enhancer-promoter interactions. Duplications involving GPR101 are known to cause X-linked acrogigantism (X-LAG) through ectopic GPR101 expression, but not all of these duplications are pathogenic. This presents a diagnostic challenge, especially in the prenatal setting. We evaluated POSTRE, a tool that predicts the regulatory impact of SVs, to distinguish pathogenic from benign GPR101 duplications. We analyzed seven non-pathogenic duplications and 27 known X-LAG-associated duplications. To enable predictions in an X-LAG-relevant tissue, enhancer maps built using H3K27ac ChIP-seq, ATAC-seq, and RNA-seq data derived from human anterior pituitary samples (NIH research protocol 97-CH-0076, Clinicaltrials.gov Identifier NCT00001595, submitted on 11 March 1999) were integrated into POSTRE. POSTRE correctly classified all 34 duplications as benign or pathogenic. In addition, one X-LAG case with mild clinical features (i.e. severe growth hormone hypersecretion without pituitary tumorigenesis) was found to include only 2/5 VGLL1 enhancers, whereas all typical X-LAG cases had ≥4 enhancers duplicated. This suggests that partial enhancer hijacking at VGLL1 could explain the different clinical features in this individual. These findings support the utility of POSTRE to support diagnostic pipelines when interpreting SVs affecting chromatin architecture in pituitary disease and highlight its potential to reduce uncertainty in genetic counseling without requiring chromatin conformation capture assays.

#2

Distinguishing benign from pathogenic duplications involving GPR101 and VGLL1-adjacent enhancers in the clinical setting with the bioinformatic tool POSTRE.

medRxiv : the preprint server for health sciences2025 Jul 10

Structural variants (SVs) that disrupt topologically associating domains (TADs) can cause disease by rewiring enhancer-promoter interactions. Duplications involving GPR101 are known to cause X-linked acrogigantism (X-LAG) by enabling aberrant expression of GPR101 through hijacking of enhancers at VGLL1. However, not all GPR101-containing duplications are pathogenic, presenting a diagnostic challenge, especially in the prenatal setting. We evaluated POSTRE, a tool designed to predict the regulatory impact of SVs, to distinguish pathogenic from benign GPR101 duplications. We analyzed six non-pathogenic duplications, and 27 known X-LAG associated pathogenic duplications. Tissue-specific enhancer maps built using H3K27ac ChIP-seq and ATAC-seq data as well as gene expression data derived from human anterior pituitary samples were integrated into POSTRE to enable predictions in a X-LAG relevant tissue context. POSTRE correctly classified all 33 duplications as benign or pathogenic. In addition, one X-LAG case with mild clinical features (e.g., severe GH hypersecretion in the absence of pituitary tumorigenesis) was found to include only 2/5 VGLL1 enhancers (also predicted to be the weakest enhancers), whereas all 26 typical X-LAG cases had ≥4 enhancers duplicated. This suggests that milder enhancer hijacking at VGLL1 could explain the different clinical features of X-LAG in this individual. These findings support the utility of POSTRE to support diagnostic pipelines when interpreting SVs affecting chromatin architecture in pituitary disease. By accurately modelling enhancer adoption in a cell type-specific context, POSTRE could help to reduce uncertainty in genetic counselling and offers a rapid alternative to performing chromatin conformation capture experiments.

#3

Gpr101 expression during early stages of murine development.

Gene expression patterns : GEP2025 Dec

The orphan G protein coupled receptor GPR101, which is implicated in X-linked acrogigantism (X-LAG), a rare pituitary disorder characterized by rapid growth a few years after birth, has received significant attention for its expression pattern in adult vertebrate tissues. However, the characterization of GPR101 expression during early embryonic development is poorly characterized. In this study, we investigated the spatiotemporal expression patterns of Gpr101 during early embryonic mouse development (E7.5-E15.5) using a global Gpr101 knock-in mouse model with an inserted LacZ reporter, Gpr101tm1b(KOMP)Mbp. Similar to previously published studies using adult tissues, we found that LacZ reporter expression was largely restricted to regions of the central nervous system. Expression was not detected until E10.5 in a region near the telencephalic vesicle. In contrast to what has been reported in adult tissues, Gpr101 expression was absent in the hypothalamus and pituitary gland during the developmental timepoints assessed. These novel observations provide a more comprehensive characterization of GPR101's expression and may offer insights into its role in growth and development across species.

#4

Non-penetrant Xq26.3 duplication involving the invariant TAD border: clinical evidence for the VGLL1 region as the GPR101 pituitary enhancer of X-linked acrogigantism.

Pituitary2025 Jul 20

X-linked acrogigantism (X-LAG; OMIM: 300942) is a rare X-linked dominant, fully penetrant form of infancy-onset pituitary gigantism caused by Xq26.3 tandem duplications involving the GPR101 gene. All previously reported X-LAG-associated duplications disrupt the integrity of the resident topologically associating domain (TAD). This creates a neo-TAD, permitting ectopic chromatin interactions between GPR101 and centromeric pituitary enhancers postulated to lie between RBMX and VGLL1, and culminating in pituitary GPR101 misexpression and growth hormone excess. Conversely, none of the few previously reported cases of Xq26.3 duplications in unaffected individuals include the tissue-invariant TAD border that shields GPR101 from its centromeric enhancers. Preservation of this boundary has thus been considered synonymous with non-penetrance of X-LAG. We examined a series of four family members from the same kindred with an incidentally detected GPR101-containing Xq26.3 duplication involving the invariant TAD border. Chromosome microarray demonstrated an interstitial chromosome Xq26.3 duplication: arr[GRCh37] Xq26.3(135,954,223 - 136,224,319)x2, including GPR101, the TAD invariant border and RBMX, but not VGLL1. None of the relatives with the Xq26.3 duplication exhibited evidence of growth hormone excess, making this the first unaffected family with a GPR101-containing Xq26.3 duplication involving the invariant TAD border. The predicted neo-TAD in this kindred excludes the VGLL1 region, which is present in all previously described X-LAG patients and absent in all previously described unaffected individuals with Xq26.3 duplications. Our clinical findings suggest that TAD border involvement is not sufficient for X-LAG to develop, and implicates the VGLL1 region as likely the sole pituitary enhancer responsible for GPR101 misexpression and the X-LAG phenotype. Pending corroborative studies, this new insight into X-LAG pathogenesis may guide interpretation of future Xq26.3 duplications and counselling of families in whom such duplications are found.

#5

Comparing models and experimental structures of the GPR101 receptor: Artificial intelligence yields highly accurate models.

Journal of molecular graphics &amp; modelling2025 Nov

Experimental structures solved through cryo-electron microscopy have recently been published for GPR101, a G protein-coupled receptor (GPCR) implicated in the genetic condition X-linked acrogigantism (X-LAG). Here, we compared these experimental structures with computational models that we previously published, including our internally developed homology models and third-party models generated through the AlphaFold2 and AlphaFold-Multistate artificial intelligence (AI) methods. Our analysis revealed considerable accuracy for both homology models and AI-generated models. However, it also revealed the general superiority of AI methods. Particularly noteworthy is the model generated by AlphaFold2, which captured with high fidelity various structural aspects, including the challenging second extracellular loop. Our previously published homology model of the GPR101-Gs protein complex, based on the β2-adrenergic receptor, accurately predicted the binding mode of the G protein to the receptor. Moreover, this model predicted the structure of the sixth transmembrane domain (TM6) significantly more accurately than the others, including those built through AI methods, suggesting that homology modeling based on templates solved in complex with the G protein of interest might be the most reliable way of modeling this transmembrane domain. Lastly, our analysis revealed that our molecular dynamics simulations did not have a significant and consistent effect on the accuracy of the models, increasing the accuracy for some domains while decreasing it for others. This work provides insights into the relative strengths of different modeling approaches for our case study on GPR101. More broadly, when considered alongside other assessment studies, it contributes to the growing body of knowledge that can guide the modeling of GPCRs for which experimental structures are not yet available.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC21 artigos no totalmostrando 54

2026

Distinguishing benign from pathogenic duplications involving GPR101 and VGLL1-adjacent enhancers in the clinical setting with the bioinformatic tool POSTRE.

NPJ genomic medicine
2025

Gpr101 expression during early stages of murine development.

Gene expression patterns : GEP
2025

Non-penetrant Xq26.3 duplication involving the invariant TAD border: clinical evidence for the VGLL1 region as the GPR101 pituitary enhancer of X-linked acrogigantism.

Pituitary
2025

Comparing models and experimental structures of the GPR101 receptor: Artificial intelligence yields highly accurate models.

Journal of molecular graphics &amp; modelling
2024

Pituitary Acrogigantism: From the Past to the Future.

Frontiers of hormone research
2024

Chromatin conformation capture in the clinic: 4C-seq/HiC distinguishes pathogenic from neutral duplications at the GPR101 locus.

Genome medicine
2024

The Genetic Pathophysiology and Clinical Management of the TADopathy, X-Linked Acrogigantism.

Endocrine reviews
2024

Case report: Management of pediatric gigantism caused by the TADopathy, X-linked acrogigantism.

Frontiers in endocrinology
2024

Basal interaction of the orphan receptor GPR101 with arrestins leads to constitutive internalization.

Biochemical pharmacology
2023

Genetic Testing in Hereditary Pituitary Tumors.

Archives of medical research
2024

GPR101: Modeling a constitutively active receptor linked to X-linked acrogigantism.

Journal of molecular graphics &amp; modelling
2023

Effective Long-term Pediatric Pegvisomant Monotherapy to Final Height in X-linked Acrogigantism.

JCEM case reports
2023

Pituitary Tumorigenesis-Implications for Management.

Medicina (Kaunas, Lithuania)
2023

The Spectrum of Familial Pituitary Neuroendocrine Tumors.

Endocrine pathology
2022

Neurofibromatosis Type 1 Has a Wide Spectrum of Growth Hormone Excess.

Journal of clinical medicine
2022

Duplications disrupt chromatin architecture and rewire GPR101-enhancer communication in X-linked acrogigantism.

American journal of human genetics
2021

Genetics of Acromegaly and Gigantism.

Journal of clinical medicine
2021

The clinical aspects of pituitary tumour genetics.

Endocrine
2021

The X-linked acrogigantism-associated gene gpr101 is a regulator of early embryonic development and growth in zebrafish.

Molecular and cellular endocrinology
2021

Congenital hypopituitarism in two brothers with a duplication of the 'acrogigantism gene' GPR101: clinical findings and review of the literature.

Pituitary
2021

A Chinese Case of X-Linked Acrogigantism and Systematic Review.

Neuroendocrinology
2020

GPR101 drives growth hormone hypersecretion and gigantism in mice via constitutive activation of Gs and Gq/11.

Nature communications
2020

HEREDITARY ENDOCRINE TUMOURS: CURRENT STATE-OF-THE-ART AND RESEARCH OPPORTUNITIES: GPR101, an orphan GPCR with roles in growth and pituitary tumorigenesis.

Endocrine-related cancer
2020

HEREDITARY ENDOCRINE TUMOURS: CURRENT STATE-OF-THE-ART AND RESEARCH OPPORTUNITIES: The roles of AIP and GPR101 in familial isolated pituitary adenomas (FIPA).

Endocrine-related cancer
2019

The Genetics of Pituitary Adenomas.

Journal of clinical medicine
2019

Somatic and germline mutations in the pathogenesis of pituitary adenomas.

European journal of endocrinology
2019

Familial X-Linked Acrogigantism: Postnatal Outcomes and Tumor Pathology in a Prenatally Diagnosed Infant and His Mother.

The Journal of clinical endocrinology and metabolism
2019

Mutations in GPR101 as a potential cause of X-linked acrogigantism and acromegaly.

Progress in molecular biology and translational science
2018

An update on the genetics of benign pituitary adenomas in children and adolescents.

Current opinion in endocrine and metabolic research
2018

Xq26.3 Duplication in a Boy With Motor Delay and Low Muscle Tone Refines the X-Linked Acrogigantism Genetic Locus.

Journal of the Endocrine Society
2019

Germline and mosaic mutations causing pituitary tumours: genetic and molecular aspects.

The Journal of endocrinology
2018

The causes and consequences of pituitary gigantism.

Nature reviews. Endocrinology
2018

An orphan G-protein-coupled receptor causes human gigantism and/or acromegaly: Molecular biology and clinical correlations.

Best practice &amp; research. Clinical endocrinology &amp; metabolism
2018

Genomic Alterations in Sporadic Pituitary Tumors.

Current neurology and neuroscience reports
2017

[Overgrowth in children and in adults: novel clinical view, novel genes, novel phenotypes].

Casopis lekaru ceskych
2017

X-LAG: How did they grow so tall?

Annales d'endocrinologie
2017

Sporadic pituitary adenomas: the role of germline mutations and recommendations for genetic screening.

Expert review of endocrinology &amp; metabolism
2017

Paleogenetic study of ancient DNA suggestive of X-linked acrogigantism.

Endocrine-related cancer
2016

Childhood acromegaly due to X-linked acrogigantism: long term follow-up.

Pituitary
2016

Gigantism: X-linked acrogigantism and GPR101 mutations.

Growth hormone &amp; IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society
2016

Screening for genetic causes of growth hormone hypersecretion.

Growth hormone &amp; IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society
2016

Genetics of gigantism and acromegaly.

Growth hormone &amp; IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society
2016

Combined treatment with octreotide LAR and pegvisomant in patients with pituitary gigantism: clinical evaluation and genetic screening.

Pituitary
2016

Characterization of GPR101 transcript structure and expression patterns.

Journal of molecular endocrinology
2016

Germline or somatic GPR101 duplication leads to X-linked acrogigantism: a clinico-pathological and genetic study.

Acta neuropathologica communications
2016

Somatic GPR101 Duplication Causing X-Linked Acrogigantism (XLAG)-Diagnosis and Management.

The Journal of clinical endocrinology and metabolism
2016

Somatic mosaicism underlies X-linked acrogigantism syndrome in sporadic male subjects.

Endocrine-related cancer
2016

GPR101 Mutations are not a Frequent Cause of Congenital Isolated Growth Hormone Deficiency.

Hormone and metabolic research = Hormon- und Stoffwechselforschung = Hormones et metabolisme
2015

[Old phenotype and new genotypes. Pituitary adenomas].

Revue medicale de Liege
2016

GHRH excess and blockade in X-LAG syndrome.

Endocrine-related cancer
2015

Pituitary gigantism: Causes and clinical characteristics.

Annales d'endocrinologie
2016

Pituitary gigantism: update on molecular biology and management.

Current opinion in endocrinology, diabetes, and obesity
2015

Clinical and genetic characterization of pituitary gigantism: an international collaborative study in 208 patients.

Endocrine-related cancer
2015

X-linked acrogigantism syndrome: clinical profile and therapeutic responses.

Endocrine-related cancer

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

Ainda não existe comunidade no Raras para Gigantismo infantil, forma familiar

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

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.

  1. Distinguishing benign from pathogenic duplications involving GPR101 and VGLL1-adjacent enhancers in the clinical setting with the bioinformatic tool POSTRE.
    NPJ genomic medicine· 2026· PMID 41540017mais citado
  2. Distinguishing benign from pathogenic duplications involving GPR101 and VGLL1-adjacent enhancers in the clinical setting with the bioinformatic tool POSTRE.
    medRxiv : the preprint server for health sciences· 2025· PMID 40630581mais citado
  3. Gpr101 expression during early stages of murine development.
    Gene expression patterns : GEP· 2025· PMID 41205973mais citado
  4. Non-penetrant Xq26.3 duplication involving the invariant TAD border: clinical evidence for the VGLL1 region as the GPR101 pituitary enhancer of X-linked acrogigantism.
    Pituitary· 2025· PMID 40684399mais citado
  5. Comparing models and experimental structures of the GPR101 receptor: Artificial intelligence yields highly accurate models.
    Journal of molecular graphics &amp; modelling· 2025· PMID 40472416mais citado
  6. Genetics of Familial Acromegaly and Pituitary Gigantism.
    J Clin Endocrinol Metab· 2026· PMID 41965096recente
  7. Acromegaly and genetics.
    Vitam Horm· 2026· PMID 41912295recente
  8. Genome architecture in endocrine diseases: X-linked acrogigantism (X-LAG) syndrome.
    Ann Endocrinol (Paris)· 2026· PMID 41887597recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:300373(Orphanet)
  2. MONDO:0010491(MONDO)
  3. GARD:18433(GARD (NIH))
  4. Busca completa no PubMed(PubMed)
  5. Q56014004(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

Gigantismo infantil, forma familiar
Compêndio · Raras BR

Gigantismo infantil, forma familiar

ORPHA:300373 · MONDO:0010491
Prevalência
<1 / 1 000 000
Casos
33 casos conhecidos
Herança
X-linked dominant
CID-10
E22.0 · Acromegalia e gigantismo hipofisário
CID-11
OMIM
300942
Ensaios
1 ativos
Início
Childhood, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C4751112
EuropePMC
Wikidata
Papers 10a
DiscussaoAtiva

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