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Hiperparatireoidismo primário grave neonatal
ORPHA:417CID-10 · E21.0CID-11 · 5A51.0OMIM 239200DOENÇA RARA

O hiperparatireoidismo primário grave neonatal (NSHPT) é caracterizado por hipercalcemia grave (> 3,5 mM) desde o nascimento e associado a hiperparatireoidismo maior.

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Introdução

O que você precisa saber de cara

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O hiperparatireoidismo primário grave neonatal (NSHPT) é caracterizado por hipercalcemia grave (> 3,5 mM) desde o nascimento e associado a hiperparatireoidismo maior.

Pesquisas ativas
1 ensaio
1 total registrados no ClinicalTrials.gov
Publicações científicas
38 artigos
Último publicado: 2026 Mar

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Início
Neonatal
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: E21.0
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Sinais e sintomas

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

Partes do corpo afetadas

🦴
Ossos e articulações
5 sintomas
📏
Crescimento
4 sintomas
🫃
Digestivo
3 sintomas
🧠
Neurológico
2 sintomas
🩸
Sangue
1 sintomas
🫁
Pulmão
1 sintomas

+ 13 sintomas em outras categorias

Características mais comuns

90%prev.
Fraturas recorrentes
Muito frequente (99-80%)
90%prev.
Esplenomegalia
Muito frequente (99-80%)
90%prev.
Hepatomegalia
Muito frequente (99-80%)
90%prev.
Aminoacidúria
Muito frequente (99-80%)
90%prev.
Morfologia metafisária anormal
Muito frequente (99-80%)
90%prev.
Tórax estreito
Muito frequente (99-80%)
30sintomas
Muito frequente (10)
Sem dados (20)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 30 características clínicas mais associadas, ordenadas por frequência.

Fraturas recorrentesRecurrent fractures
Muito frequente (99-80%)90%
EsplenomegaliaSplenomegaly
Muito frequente (99-80%)90%
HepatomegaliaHepatomegaly
Muito frequente (99-80%)90%
AminoacidúriaAminoaciduria
Muito frequente (99-80%)90%
Morfologia metafisária anormalAbnormal metaphysis morphology
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico38PubMed
Últimos 10 anos17publicações
Pico20213 papers
Linha do tempo
2026Hoje · 2026🧪 2018Primeiro ensaio clínico📈 2021Ano de pico
Publicações por ano (últimos 10 anos)

Encontrou um erro ou informação desatualizada? Sugira uma correção →

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 recessive, Not applicable.

CASRExtracellular calcium-sensing receptorDisease-causing germline mutation(s) (loss of function) inAltamente restrito
FUNÇÃO

G-protein-coupled receptor that senses changes in the extracellular concentration of calcium ions and plays a key role in maintaining calcium homeostasis (PubMed:17555508, PubMed:19789209, PubMed:21566075, PubMed:22114145, PubMed:22789683, PubMed:23966241, PubMed:25104082, PubMed:25292184, PubMed:25766501, PubMed:26386835, PubMed:32817431, PubMed:33603117, PubMed:34194040, PubMed:34467854, PubMed:7759551, PubMed:8636323, PubMed:8702647, PubMed:8878438). Senses fluctuations in the circulating cal

LOCALIZAÇÃO

Cell membrane

VIAS BIOLÓGICAS (3)
G alpha (i) signalling eventsClass C/3 (Metabotropic glutamate/pheromone receptors)G alpha (q) signalling events
MECANISMO DE DOENÇA

Hypocalciuric hypercalcemia, familial 1

A form of hypocalciuric hypercalcemia, a disorder of mineral homeostasis that is transmitted as an autosomal dominant trait with a high degree of penetrance. It is characterized biochemically by lifelong elevation of serum calcium concentrations and is associated with inappropriately low urinary calcium excretion and a normal or mildly elevated circulating parathyroid hormone level. Hypermagnesemia is typically present. Affected individuals are usually asymptomatic and the disorder is considered benign. However, chondrocalcinosis and pancreatitis occur in some adults.

OUTRAS DOENÇAS (6)
autosomal dominant hypocalcemia 1familial hypocalciuric hypercalcemia 1neonatal severe primary hyperparathyroidismautosomal dominant hypocalcemia
HGNC:1514UniProt:P41180
TRPV6Transient receptor potential cation channel subfamily V member 6Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Calcium selective cation channel that mediates Ca(2+) uptake in various tissues, including the intestine (PubMed:11097838, PubMed:11248124, PubMed:11278579, PubMed:15184369, PubMed:23612980, PubMed:29258289). Important for normal Ca(2+) ion homeostasis in the body, including bone and skin (By similarity). The channel is activated by low internal calcium level, probably including intracellular calcium store depletion, and the current exhibits an inward rectification (PubMed:15184369). Inactivatio

LOCALIZAÇÃO

Cell membrane

VIAS BIOLÓGICAS (1)
TRP channels
MECANISMO DE DOENÇA

Hyperparathyroidism, transient neonatal

An autosomal recessive disease characterized by impaired transplacental maternal-fetal transport of calcium, high serum PTH levels and signs of metabolic bone disease in the neonatal period. Skeletal anomalies include generalized osteopenia, narrow chest, short ribs with multiple healing fractures, and bowing or fractures of long bones. Affected individuals experience postnatal respiratory and feeding difficulties. The condition improves within a short time after birth once calcium is provided orally.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Tecido-específico)
Próstata
57.8 TPM
Pâncreas
49.6 TPM
Skin Not Sun Exposed Suprapubic
19.6 TPM
Skin Sun Exposed Lower leg
16.5 TPM
Glândula salivar
15.0 TPM
OUTRAS DOENÇAS (3)
hyperparathyroidism, transient neonatalhereditary chronic pancreatitisneonatal severe primary hyperparathyroidism
HGNC:14006UniProt:Q9H1D0

Variantes genéticas (ClinVar)

612 variantes patogênicas registradas no ClinVar.

🧬 TRPV6: NM_018646.6(TRPV6):c.881_882del (p.Val294fs) ()
🧬 TRPV6: NM_018646.6(TRPV6):c.311dup (p.Leu104fs) ()
🧬 TRPV6: NM_018646.6(TRPV6):c.282dup (p.Asp95fs) ()
🧬 TRPV6: NM_018646.6(TRPV6):c.241C>T (p.Gln81Ter) ()
🧬 TRPV6: GRCh37/hg19 7q33-36.3(chr7:137521595-159119707)x1 ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 278 variantes classificadas pelo ClinVar.

56
222
Patogênica (20.1%)
VUS (79.9%)
VARIANTES MAIS SIGNIFICATIVAS
CASR: NM_000388.4(CASR):c.1031_1034delinsT (p.His344_Asn345delinsLeu) [Pathogenic]
CASR: NM_000388.4(CASR):c.490C>T (p.Gln164Ter) [Pathogenic]
CASR: NM_000388.4(CASR):c.897G>A (p.Trp299Ter) [Likely pathogenic]
CASR: NM_000388.4(CASR):c.395C>A (p.Ser132Ter) [Likely pathogenic]
CASR: NM_000388.4(CASR):c.3026_3031delinsAACACC (p.Arg1009_Glu1011delinsGlnHisGln) [Uncertain significance]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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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 — Hiperparatireoidismo primário grave neonatal

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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

🥇Melhor nível de evidência: Ensaio randomizado
Timeline de publicações
17 papers (10 anos)
#1

A novel homozygous inactivating mutation of the calcium-sensing receptor causing familial hypocalciuric hypercalcemia complicated with primary hyperparathyroidism due to parathyroid adenoma: A case report.

The Journal of international medical research2026 Mar

Familial hypocalciuric hypercalcemia is an autosomal dominant genetic disorder characterized by mild to moderate hypercalcemia, mild hypermagnesemia, and normal or inappropriately elevated parathyroid hormone levels. Familial hypocalciuric hypercalcemia 1 is the most prevalent form of familial hypocalciuric hypercalcemia and is typically caused by heterozygous loss-of-function mutations in the calcium-sensing receptor (CaSR) gene. Homozygous CaSR mutations are more commonly associated with neonatal severe primary hyperparathyroidism. We report the case of a female patient in her early 40s harboring a novel homozygous frameshift mutation in the CaSR gene (c.2603_2604insTT), resulting in familial hypocalciuric hypercalcemia 1. The patient presented with persistent hypocalciuria, hypercalcemia, and primary hyperparathyroidism, along with a family history of consanguinity. This case highlights the phenotypic variability associated with CaSR mutations and broadens the clinical spectrum of homozygous CaSR-related disorders. Increased clinical awareness of atypical genetic presentations is essential to avoid misdiagnosis and to ensure appropriate management of patients with familial disorders of calcium homeostasis.

#2

Congenital primary hyperparathyroidism.

Best practice &amp; research. Clinical endocrinology &amp; metabolism2025 Mar

Primary hyperparathyroidism is a constitutive excess of parathyroid hormone (PTH) in the blood, caused by an idiopathic defect of growth and/or function of the parathyroid glands. PHPT is usually an acquired disease, due to the sporadic development of parathyroid hyperplasia, adenoma, and, in extremely rare cases, malignant carcinoma, mainly occurring by the sixth decade of life. In about 5-10 % of cases PHPT manifests in the context of congenital disorders, having a genetic base and occurring much earlier in life, compared to the sporadic counterpart. Congenital PHPT can manifest as isolated PHPT or as syndromic PHPT in the context of complex multiorgan disorders. Non-syndromic inherited PHPT includes Familial Hypocalciuric Hypercalcemia types 1, 2 and 3, Neonatal Severe Primary Hyperparathyroidism, and three different genetic forms of Familial Isolated Hyperparathyroidism, while syndromic inherited PHPT includes Hyperparathyroidism-Jaw Tumor Syndrome and Multiple Endocrine Neoplasias types 1, 2 A and 4.

#3

Generation of CRISPR/Cas9 modified human iPSC line with correction of heterozygous mutation in exon 6 of the CaSR gene.

Human cell2024 Oct 24

The calcium-sensing receptor (CaSR) gene encodes a cell membrane G protein-coupled receptor (GPCR) which has a key role in maintaining the extracellular Ca2+ homeostasis. We aimed at correcting the compound heterozygous mutation in the 6th [c.1656delA, p.I554SfsX73] and 7th [c.2217 T > A, p.C739X] exons of the CASR gene which the original patient-derived iPSC line had. The mutation is associated with neonatal severe primary hyperparathyroidism of the patient. We generated and characterized a CRISP/Cas9-edited hiPSC line with the restored sequence in the sixth exon of the CASR gene, bearing only heterozygous mutation in the 7th exon. The results showed that the new genetically modified cell line has karyotype without abnormalities, typical hiPSCs morphology, characteristic expression of pluripotency markers, and ability to develop into three germ layers, and differentiates in chondrogenic, adipogenic, osteogenic directions. This new cell line will complement the existing pool of CaSR-mutated cell lines, a valuable resource for in-depth understanding of neonatal severe primary hyperparathyroidism. This will allow further exploration of the application of pharmacological drugs in the context of personalized medicine to correct Ca-homeostasis disorders.

#4

Familial states of primary hyperparathyroidism: an update.

Journal of endocrinological investigation2024 Sep

Familial primary hyperparathyroidism (PHPT) includes syndromic and non-syndromic disorders. The former are characterized by the occurrence of PHPT in association with extra-parathyroid manifestations and includes multiple endocrine neoplasia (MEN) types 1, 2, and 4 syndromes, and hyperparathyroidism-jaw tumor (HPT-JT). The latter consists of familial hypocalciuric hypercalcemia (FHH) types 1, 2 and 3, neonatal severe primary hyperparathyroidism (NSHPT), and familial isolated primary hyperparathyroidism (FIHP). The familial forms of PHPT show different levels of PHPT penetrance, developing earlier and with multiglandular involvement compared to sporadic counterpart. All these diseases exhibit Mendelian inheritance patterns, and for most of them, the genes responsible have been identified. DNA testing for predisposing mutations is helpful in index cases or in individuals with a high suspicion of the disease. Early recognition of hereditary disorders of PHPT is of great importance for the best clinical and surgical approach. Genetic testing is useful in routine clinical practice because it will also involve appropriate screening for extra-parathyroidal manifestations related to the syndrome as well as the identification of asymptomatic carriers of the mutation. The aim of the review is to discuss the current knowledge on the clinical and genetic profile of these disorders along with the importance of genetic testing in clinical practice.

#5

Cinacalcet therapy in a child with novel homozygous CASR p.Glu353Lys mutation causing familial hypocalciuric hypercalcemia type 1: case report and review of the literature.

The Turkish journal of pediatrics2023

Familial hypocalciuric hypercalcemia (FHH) is one of the conditions that should be considered in the differential diagnosis of hypercalcemia and normo-hypophosphatemia in childhood. Heterozygous Calcium-sensing receptor (CASR) gene mutations cause FHH, and homozygous CASR gene mutations cause neonatal severe primary hyperparathyroidism (NSHPT). Cinacalcet is an allosteric modulator of Calciumsensing receptor (CaSR), and has been used in the treatment of these clinical entities in recent years. A 26-month-old boy was examined for a recurrent rash. During the evaluation, hypercalcemia (13.3 mg/ dL), hypophosphatemia (2.3 mg/dL) and inappropriately normal PTH level (67 pg/mL) were observed. Neck and renal ultrasonography were normal. The parathyroid scintigraphy was unremarkable. The patient`s family members were also evaluated, and hypocalciuria (fractional excretion of calcium were 0.01%, 0.04% on two separate tests) was detected concurrently with the patient`s hypercalcemia. The mother`s serum calcium was 10.2 mg/dL, the father`s was 10.6 mg/dL, and the brother`s was 12.8 mg/dL. CASR gene sequencing showed a novel homozygous mutation in exon 4 (c.1057G > A), which had generated a substitution of the amino acid glutamate to lysine at codon 353 (p.Glu353Lys). This mutation was homozygous in the children and heterozygous in the parents. Fluid hydration, furosemide, oral phosphorus, prednisolone, pamidronate and cinacalcet treatments were used in the management of hypercalcemia of the proband. A longer and more effective control was achieved with cinacalcet treatment. FHH can be seen in heterozygous as well as homozygous CASR gene mutations. Different clinical findings may occur in different individuals from the same family. Cinacalcet therapy can be used successfully in the treatment of individuals with FHH.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC10 artigos no totalmostrando 17

2026

A novel homozygous inactivating mutation of the calcium-sensing receptor causing familial hypocalciuric hypercalcemia complicated with primary hyperparathyroidism due to parathyroid adenoma: A case report.

The Journal of international medical research
2025

Congenital primary hyperparathyroidism.

Best practice &amp; research. Clinical endocrinology &amp; metabolism
2024

Generation of CRISPR/Cas9 modified human iPSC line with correction of heterozygous mutation in exon 6 of the CaSR gene.

Human cell
2024

Familial states of primary hyperparathyroidism: an update.

Journal of endocrinological investigation
2023

Cinacalcet therapy in a child with novel homozygous CASR p.Glu353Lys mutation causing familial hypocalciuric hypercalcemia type 1: case report and review of the literature.

The Turkish journal of pediatrics
2023

Ten-year follow-up report and neurologic sequelae in a case of neonatal severe primary hyperparathyroidism.

Clinical case reports
2021

Case Report: Unusual Presentations of Loss-of-Function Mutations of the Calcium-Sensing Receptor.

Frontiers in medicine
2021

Generation of an induced pluripotent stem cell line HPCASRi002-A from a patient with neonatal severe primary hyperparathyroidism caused by a compound heterozygous mutation in the CASR gene.

Stem cell research
2021

Pediatric hyperparathyroidism: review and imaging update.

Pediatric radiology
2020

Neonatal Severe Primary Hyperparathyroidism: A Series of Four Cases and their Long-term Management in India.

Indian journal of endocrinology and metabolism
2020

A rare cause of neonatal hypercalcemia: Neonatal severe primary hyperparathyroidism: A case report and review of the literature.

International journal of surgery case reports
2019

Evolution of Our Understanding of the Hyperparathyroid Syndromes: A Historical Perspective.

Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research
2018

Case report: acute clinical presentation and neonatal management of primary hyperparathyroidism due to a novel CaSR mutation.

BMC pediatrics
2017

Familial Hyperparathyroidism - Disorders of Growth and Secretion in Hormone-Secretory Tissue.

Hormone and metabolic research = Hormon- und Stoffwechselforschung = Hormones et metabolisme
2017

Hypercalcemic Disorders in Children.

Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research
2016

Hyperplasia in glands with hormone excess.

Endocrine-related cancer
2015

The calcium sensing receptor: from calcium sensing to signaling.

Science China. Life sciences

Associações

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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. A novel homozygous inactivating mutation of the calcium-sensing receptor causing familial hypocalciuric hypercalcemia complicated with primary hyperparathyroidism due to parathyroid adenoma: A case report.
    The Journal of international medical research· 2026· PMID 41852233mais citado
  2. Congenital primary hyperparathyroidism.
    Best practice &amp; research. Clinical endocrinology &amp; metabolism· 2025· PMID 39939267mais citado
  3. Generation of CRISPR/Cas9 modified human iPSC line with correction of heterozygous mutation in exon 6 of the CaSR gene.
    Human cell· 2024· PMID 39446198mais citado
  4. Familial states of primary hyperparathyroidism: an update.
    Journal of endocrinological investigation· 2024· PMID 38635114mais citado
  5. Cinacalcet therapy in a child with novel homozygous CASR p.Glu353Lys mutation causing familial hypocalciuric hypercalcemia type 1: case report and review of the literature.
    The Turkish journal of pediatrics· 2023· PMID 37853976mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:417(Orphanet)
  2. OMIM OMIM:239200(OMIM)
  3. MONDO:0009397(MONDO)
  4. GARD:2838(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q55781961(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

Hiperparatireoidismo primário grave neonatal
Compêndio · Raras BR

Hiperparatireoidismo primário grave neonatal

ORPHA:417 · MONDO:0009397
Prevalência
Unknown
Herança
Autosomal recessive, Not applicable
CID-10
E21.0 · Hiperparatireoidismo primário
CID-11
Ensaios
1 ativos
Início
Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1832615
Repurposing
6 candidatos
calcifediolvitamin D receptor agonist
cinacalcetcalcium channel activator
clodronic-acidbone resorption inhibitor
+3 outros
EuropePMC
Wikidata
Papers 10a
Evidência
🥇 Ensaio rand.
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