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Paraplegia espástica autossômica recessiva tipo 54
ORPHA:320380CID-10 · G11.4CID-11 · 8B44.01OMIM 615033DOENÇA RARA

Forma rara e complexa de paraplegia espástica hereditária caracterizada pelo início na primeira infância de paraplegia espástica progressiva associada a sinais cerebelares, baixa estatura, atraso no desenvolvimento psicomotor, deficiência intelectual e, menos comumente, contraturas nos pés, disartria, disfagia, estrabismo e hipoplasia óptica. SPG54 é causado por mutações no gene DDHD2 (8p11.23) que codifica a fosfolipase DDHD2.

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Introdução

O que você precisa saber de cara

📋

Forma rara e complexa de paraplegia espástica hereditária caracterizada pelo início na primeira infância de paraplegia espástica progressiva associada a sinais cerebelares, baixa estatura, atraso no desenvolvimento psicomotor, deficiência intelectual e, menos comumente, contraturas nos pés, disartria, disfagia, estrabismo e hipoplasia óptica. SPG54 é causado por mutações no gene DDHD2 (8p11.23) que codifica a fosfolipase DDHD2.

Publicações científicas
363 artigos
Último publicado: 2026 Apr 1

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
6
pacientes catalogados
Início
Childhood
+ infancy
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: G11.4
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (2)
0202010694
Sequenciamento completo do exoma (WES)genetic_test
0301070040
Atendimento em reabilitação — doenças rarasrehabilitation
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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

🧠
Neurológico
6 sintomas
💪
Músculos
4 sintomas
👁️
Olhos
3 sintomas
🫃
Digestivo
3 sintomas
😀
Face
3 sintomas
❤️
Coração
2 sintomas

+ 10 sintomas em outras categorias

Características mais comuns

100%prev.
Hiperintensidades da substância branca periventricular
Frequente (79-30%)
100%prev.
Paraplegia espástica
Muito frequente (99-80%)
100%prev.
Hipoplasia do corpo caloso
Frequente (79-30%)
100%prev.
Atraso global do desenvolvimento
Muito frequente (99-80%)
100%prev.
Hiperreflexia
Frequência: 12/12
90%prev.
Deficiência intelectual
Muito frequente (99-80%)
34sintomas
Muito frequente (6)
Frequente (13)
Ocasional (9)
Sem dados (6)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 34 características clínicas mais associadas, ordenadas por frequência.

Hiperintensidades da substância branca periventricularPeriventricular white matter hyperintensities
Frequente (79-30%)100%
Paraplegia espásticaSpastic paraplegia
Muito frequente (99-80%)100%
Hipoplasia do corpo calosoHypoplasia of the corpus callosum
Frequente (79-30%)100%
Atraso global do desenvolvimentoGlobal developmental delay
Muito frequente (99-80%)100%
HiperreflexiaHyperreflexia
Frequência: 12/12100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico363PubMed
Últimos 10 anos15publicações
Pico20213 papers
Linha do tempo
2026Hoje · 2026📈 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

1 gene identificado com associação a esta condição. Padrão de herança: Autosomal recessive.

DDHD2Triacylglycerol hydrolase DDHD2Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Diacylglycerol (DAG) and triacylglycerol (TAG) lipase required for proper lipid homeostasis in the central nervous system (PubMed:29278326, PubMed:37832604). It cooperates with PNPLA2/ATGL in neuronal TAG catabolism and hydrolyzes sn-1,3 DAG downstream of PNPLA2/ATGL (By similarity). In vitro, it also acts as a phospholipase that hydrolyzes preferentially phosphatidic acids, including 1,2-dioleoyl-sn-phosphatidic acid, phosphatidylcholine and phosphatidylethanolamine. Specifically binds to phosp

LOCALIZAÇÃO

Cytoplasm, cytosolEndoplasmic reticulum-Golgi intermediate compartmentGolgi apparatus, cis-Golgi network

VIAS BIOLÓGICAS (1)
Synthesis of PA
MECANISMO DE DOENÇA

Spastic paraplegia 54, autosomal recessive

A form of spastic paraplegia, a neurodegenerative disorder characterized by a slow, gradual, progressive weakness and spasticity of the lower limbs. Rate of progression and the severity of symptoms are quite variable. Initial symptoms may include difficulty with balance, weakness and stiffness in the legs, muscle spasms, and dragging the toes when walking. Complicated forms are recognized by additional variable features including spastic quadriparesis, seizures, dementia, amyotrophy, extrapyramidal disturbance, cerebral or cerebellar atrophy, optic atrophy, and peripheral neuropathy, as well as by extra neurological manifestations. SPG54 patients have delayed psychomotor development, intellectual disability, and early-onset spasticity of the lower limbs. Brain MRI shows a thin corpus callosum and periventricular white matter lesions, and an abnormal lipid peak due to accumulation of neutral lipids in certain brain regions.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Cérebro - Hemisfério cerebelar
52.8 TPM
Brain Spinal cord cervical c-1
43.3 TPM
Nervo tibial
40.4 TPM
Cerebelo
40.2 TPM
Ovário
35.3 TPM
INTERAÇÕES PROTEICAS (1)
OUTRAS DOENÇAS (1)
hereditary spastic paraplegia 54
HGNC:29106UniProt:O94830

Medicamentos aprovados (FDA)

1 medicamento encontrado nos registros da FDA americana.

💊 Penicillamine (PENICILLAMINE)
Ver no DailyMed/FDA

Variantes genéticas (ClinVar)

110 variantes patogênicas registradas no ClinVar.

🧬 DDHD2: NM_015214.3(DDHD2):c.1240_1243del (p.Glu414fs) ()
🧬 DDHD2: GRCh37/hg19 8p11.23-11.1(chr8:36650289-43776564)x3 ()
🧬 DDHD2: NM_015214.3(DDHD2):c.1249-13T>A ()
🧬 DDHD2: NM_015214.3(DDHD2):c.1249-235T>A ()
🧬 DDHD2: NM_015214.3(DDHD2):c.1396G>T (p.Glu466Ter) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 1,247 variantes classificadas pelo ClinVar.

125
1122
Patogênica (10.0%)
Benigna (90.0%)
VARIANTES MAIS SIGNIFICATIVAS
ATP13A2: NM_022089.4(ATP13A2):c.2436C>G (p.Tyr812Ter) [Likely pathogenic]
ATP13A2: NM_022089.4(ATP13A2):c.2592C>A (p.Cys864Ter) [Pathogenic]
ZFR: NM_016107.5(ZFR):c.3018G>A (p.Gln1006=) [Likely benign]
ATP13A2: NM_022089.4(ATP13A2):c.249C>T (p.Ala83=) [Likely benign]
ATP13A2: NM_022089.4(ATP13A2):c.2727C>T (p.Ser909=) [Likely benign]

Vias biológicas (Reactome)

1 via biológica associada aos genes desta condição.

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Paraplegia espástica autossômica recessiva tipo 54

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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

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

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Publicações mais relevantes

Timeline de publicações
44 papers (10 anos)
#1

Comprehensive Characterization of Spastic Paraplegia in Korean Patients: A Single-Center Experience over Two Decades.

Yonsei medical journal2026 Jan

Hereditary spastic paraplegia (HSP) refers to a group of genetic neurodegenerative diseases marked by gradually worsening spasticity and hyperreflexia in the lower extremities. This study aimed to describe the clinical and genetic characteristics of Korean patients with spastic paraplegia. We retrospectively reviewed medical records of 69 patients with spastic paraplegia from 54 unrelated families between 2002 and 2024. Genetic, clinical, electrophysiological, and radiological features were comprehensively analyzed. Causative genes were identified in 34 (63%) of 54 unrelated families; SPAST, detected in 26 families, was the most prevalent. Seven novel pathogenic variants were identified. Clinically, the median age of symptom onset was 25 years [14.0-37.0]. Out of 69 patients with spastic paraplegia, 51 (74%) presented with the pure form of spastic paraplegia, which included all patients with SPG4. Spastic gait was a universal feature in all patients. Urinary dysfunction was present in 42 (61%) patients. Additional neurologic manifestations included peripheral neuropathy 9 (13%), cognitive impairment 5 (7%), upper limb weakness 4 (6%), dysarthria 4 (6%), dysphagia 3 (4%), ataxia 3 (4%), and scoliosis 1 (3%). Brain MRI findings demonstrated a thin corpus callosum in two patients with SPG11; all patients with SPG4 had normal findings. Spine MRI revealed spinal cord atrophy in 16 (27%) patients, including 6 (21%) patients with SPG4. The study comprehensively reviewed genetic and clinical spectra of spastic paraplegia in Korean patients, emphasizing the predominance of SPAST as the causative gene and underscoring the genetic and phenotypic heterogeneity of spastic paraplegia.

#2

DDHD2 provides a flux of saturated fatty acids for neuronal energy and function.

Nature metabolism2025 Oct

Although fatty acids support mitochondrial ATP production in most tissues, neurons are believed to rely exclusively on glucose for energy. Here we show that genetic ablation of the triglyceride and phospholipid lipase Ddhd2 impairs mitochondrial respiration and ATP synthesis in cultured neurons, despite increased glycolysis. This defect arises from reduced levels of long-chain saturated free fatty acids, particularly myristic, palmitic and stearic acids, normally released in an activity-dependent manner by Ddhd2. Inhibition of mitochondrial fatty acid import in wild-type neurons similarly reduced mitochondrial respiration and ATP production. Saturated fatty acyl-coenzyme A treatment restored mitochondrial energy production in Ddhd2 knockout neurons. When provided in combination, these activated fatty acyl-CoA supplements also rescued defects in membrane trafficking, synaptic function and protein homeostasis. These findings uncover that neurons perform β-oxidation of endogenous long-chain free fatty acids to meet ATP demands and reveal a potential therapeutic strategy for hereditary spastic paraplegia 54 caused by DDHD2 mutations.

#3

Longitudinal Dynamics of Plasma Neurofilament Light Chain in Hereditary Spastic Paraplegia Type 11 (HSP-SPG11) and Type 15 (HSP-ZFYVE26).

Movement disorders : official journal of the Movement Disorder Society2025 Dec 09

HSP-SPG11 and HSP-ZFYVE26 are autosomal-recessive forms of hereditary spastic paraplegias (HSPs). As therapeutic trials emerge, validated biomarkers are critically needed. To evaluate plasma neurofilament light chain (pNfL) as a biomarker for neurodegeneration and disease progression. We analyzed pNfL levels in 57 patients (36 HSP-SPG11, 21 HSP-ZFYVE26) and matched controls using single-molecule array technology. Longitudinal clinical and biomarker data were collected over 5 years. Baseline pNfL levels were significantly elevated in patients: 33.85 pg/mL (IQR 25.15-47.38) in HSP-SPG11, 46.70 pg/mL (IQR 29.95-54.84) in HSP-ZFYVE26, and 4.90 pg/mL (IQR 3.48-6.90) in controls (P < 0.001). No significant difference was observed between HSP-SPG11 and HSP-ZFYVE26. In matched pair analysis, pNfL showed inverse correlation with age (ρ = -0.463, P < 0.001). Baseline pNfL did not predict future clinical progression. Elevated pNfL reflects early neuroaxonal injury in HSP-SPG11 and HSP-ZFYVE26; however, it could not be used as a surrogate for disease progression. © 2025 International Parkinson and Movement Disorder Society.

#4

DDHD2, whose mutations cause spastic paraplegia type 54, enhances lipophagy via engaging ATG8 family proteins.

Cell death and differentiation2024 Mar

Hereditary spastic paraplegia (HSP) is a group of inherited neurodegenerative disorders characterized by progressive lower limb spasticity and weakness. One subtype of HSP, known as SPG54, is caused by biallelic mutations in the DDHD2 gene. The primary pathological feature observed in patients with SPG54 is the massive accumulation of lipid droplets (LDs) in the brain. However, the precise mechanisms and roles of DDHD2 in regulating lipid homeostasis are not yet fully understood. Through Affinity Purification-Mass Spectroscopy (AP-MS) analysis, we identify that DDHD2 interacts with multiple members of the ATG8 family proteins (LC3, GABARAPs), which play crucial roles in lipophagy. Mutational analysis reveals the presence of two authentic LIR motifs in DDHD2 protein that are essential for its binding to LC3/GABARAPs. We show that DDHD2 deficiency leads to LD accumulation, while enhanced DDHD2 expression reduces LD formation. The LC3/GABARAP-binding capacity of DDHD2 and the canonical autophagy pathway both contribute to its LD-eliminating activity. Moreover, DDHD2 enhances the colocalization between LC3B and LDs to promote lipophagy. LD·ATTEC, a small molecule that tethers LC3 to LDs to enhance their autophagic clearance, effectively counteracts DDHD2 deficiency-induced LD accumulation. These findings provide valuable insights into the regulatory roles of DDHD2 in LD catabolism and offer a potential therapeutic approach for treating SPG54 patients.

#5

DDHD2 promotes lipid droplet catabolism by acting as a TAG lipase and a cargo receptor for lipophagy.

Autophagy2024 Oct

Mutations in the DDHD2 (DDHD domain containing 2) gene cause autosomal recessive spastic paraplegia type 54 (SPG54), a rare neurodegenerative disorder characterized by the early childhood onset of progressive spastic paraplegia. DDHD2 is reported as the principal brain triacylglycerol (TAG) lipase whose dysfunction causes massive lipid droplet (LD) accumulation in the brains of SPG54 patients. However, the precise functions of DDHD2 in regulating LD catabolism are not yet fully understood. In a recent study, we demonstrate that DDHD2 interacts with multiple members of the Atg8-family proteins (MAP1LC3/LC3s, GABARAPs), which play crucial roles in lipophagy. DDHD2 possesses two LC3-interacting region (LIR) motifs that contribute to its LD-eliminating activity. Moreover, DDHD2 enhances the colocalization between LC3B and LDs to promote lipophagy. LD·ATTEC, a compound that tethers LC3 to LDs to enhance their macroautophagic/autophagic clearance, effectively counteracts DDHD2 deficiency-induced LD accumulation. These findings provide insights into the dual functions of DDHD2 as a TAG lipase and cargo receptor for lipophagy in neuronal LD catabolism, and also suggest a potential therapeutic approach for treating SPG54 patients.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC28 artigos no totalmostrando 15

2026

Comprehensive Characterization of Spastic Paraplegia in Korean Patients: A Single-Center Experience over Two Decades.

Yonsei medical journal
2025

Longitudinal Dynamics of Plasma Neurofilament Light Chain in Hereditary Spastic Paraplegia Type 11 (HSP-SPG11) and Type 15 (HSP-ZFYVE26).

Movement disorders : official journal of the Movement Disorder Society
2025

DDHD2 provides a flux of saturated fatty acids for neuronal energy and function.

Nature metabolism
2024

DDHD2 promotes lipid droplet catabolism by acting as a TAG lipase and a cargo receptor for lipophagy.

Autophagy
2024

MRI-ARSACS: An Imaging Index for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) Identification Based on the Multicenter PROSPAX Study.

Movement disorders : official journal of the Movement Disorder Society
2024

DDHD2, whose mutations cause spastic paraplegia type 54, enhances lipophagy via engaging ATG8 family proteins.

Cell death and differentiation
2023

Biallelic DDHD2 mutations in patients with adult-onset complex hereditary spastic paraplegia.

Annals of clinical and translational neurology
2022

Clinical Manifestations Associated with the Domain-Containing Protein 2 Gene Mutation in an Iranian Family with Spastic Paraplegia 54.

Neuro-degenerative diseases
2023

Expanding the spectrum of KIF5A mutations-case report of a large kindred with familial ALS and overlapping syndrome.

Amyotrophic lateral sclerosis &amp; frontotemporal degeneration
2022

Case report: Novel compound heterozygous missense mutations in the DDHD2 gene in a Chinese patient associated with spastic paraplegia type 54.

Frontiers in pediatrics
2021

Clinical and molecular characterization of a large cohort of childhood onset hereditary spastic paraplegias.

Scientific reports
2021

A Japanese hereditary spastic paraplegia family with a rare nonsynonymous variant in the SPAST gene.

Human genome variation
2021

Hereditary spastic paraplegia type 11: Clinicogenetic lessons from 339 patients.

Journal of clinical neuroscience : official journal of the Neurosurgical Society of Australasia
2020

Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1.

Molecular genetics &amp; genomic medicine
2016

A novel frameshift mutation of DDHD1 in a Japanese patient with autosomal recessive spastic paraplegia.

European journal of medical genetics
Ver todos os 28 no EuropePMC

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

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

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. Comprehensive Characterization of Spastic Paraplegia in Korean Patients: A Single-Center Experience over Two Decades.
    Yonsei medical journal· 2026· PMID 41431411mais citado
  2. DDHD2 provides a flux of saturated fatty acids for neuronal energy and function.
    Nature metabolism· 2025· PMID 41028912mais citado
  3. Longitudinal Dynamics of Plasma Neurofilament Light Chain in Hereditary Spastic Paraplegia Type 11 (HSP-SPG11) and Type 15 (HSP-ZFYVE26).
    Movement disorders : official journal of the Movement Disorder Society· 2025· PMID 41365832mais citado
  4. DDHD2, whose mutations cause spastic paraplegia type 54, enhances lipophagy via engaging ATG8 family proteins.
    Cell death and differentiation· 2024· PMID 38332048mais citado
  5. DDHD2 promotes lipid droplet catabolism by acting as a TAG lipase and a cargo receptor for lipophagy.
    Autophagy· 2024· PMID 38909316mais citado
  6. Six novel SACS mutations expand the autosomal recessive spastic ataxia of Charlevoix-Saguenay spectrum.
    Orphanet J Rare Dis· 2026· PMID 41923236recente
  7. Clinical, Radiological, and Genetic Profile of Patients with FA2H-Associated Neurodegeneration: Eight Cases from India and a Review of the Literature.
    Tremor Other Hyperkinet Mov (N Y)· 2026· PMID 41798181recente
  8. Peripheral Neuropathy-Predominant Adult-Onset Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay: Novel Variant in the SACS gene.
    Ann Indian Acad Neurol· 2026· PMID 41784076recente
  9. The Cerebellar Cognitive-Affective Syndrome Scale Reveals Consistent, Early, and Progressive Neuropsychological Deficits in Autosomal-Recessive Spastic Ataxia of Charlevoix-Saguenay: A Large International Cross-Sectional Study.
    Mov Disord· 2026· PMID 41669957recente
  10. Generation of eight human induced pluripotent stem cells lines from patients with Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
    Stem Cell Res· 2026· PMID 41529449recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:320380(Orphanet)
  2. OMIM OMIM:615033(OMIM)
  3. MONDO:0014018(MONDO)
  4. GARD:17475(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q32143177(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

Paraplegia espástica autossômica recessiva tipo 54
Compêndio · Raras BR

Paraplegia espástica autossômica recessiva tipo 54

ORPHA:320380 · MONDO:0014018
Prevalência
<1 / 1 000 000
Casos
6 casos conhecidos
Herança
Autosomal recessive
CID-10
G11.4 · Paraplegia espástica hereditária
CID-11
Início
Childhood, Infancy
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C3539495
EuropePMC
Wikidata
Papers 10a
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