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Doença de Refsum
ORPHA:773CID-10 · G60.1CID-11 · 5C57.1OMIM 266500DOENÇA RARA

Doença metabólica multissistêmica, muito rara, clinicamente variável, caracterizada por anosmia, retinite pigmentosa de início precoce e possíveis manifestações neurológicas, incluindo neuropatia e ataxia cerebelar, surdez, ictiose, anormalidades esqueléticas e arritmia cardíaca. É caracterizada bioquimicamente pelo acúmulo de ácido fitânico no plasma e nos tecidos.

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Introdução

O que você precisa saber de cara

📋

Doença metabólica multissistêmica, muito rara, clinicamente variável, caracterizada por anosmia, retinite pigmentosa de início precoce e possíveis manifestações neurológicas, incluindo neuropatia e ataxia cerebelar, surdez, ictiose, anormalidades esqueléticas e arritmia cardíaca. É caracterizada bioquimicamente pelo acúmulo de ácido fitânico no plasma e nos tecidos.

Pesquisas ativas
4 ensaios
10 total registrados no ClinicalTrials.gov
Publicações científicas
26 artigos
Último publicado: 2026 Mar

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
1-9 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.1
Europe
Casos conhecidos
60
pacientes catalogados
Início
Adolescent
+ adult, childhood
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: G60.1
🇧🇷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

👁️
Olhos
10 sintomas
🧠
Neurológico
7 sintomas
🦴
Ossos e articulações
5 sintomas
❤️
Coração
5 sintomas
💪
Músculos
3 sintomas
🫘
Rins
2 sintomas

+ 18 sintomas em outras categorias

Características mais comuns

100%prev.
Atividade reduzida da fitanato oxidase em fibroblastos cultivados
Frequência: 20/20
90%prev.
Deficiência auditiva neurossensorial
Muito frequente (99-80%)
90%prev.
Pele seca
Muito frequente (99-80%)
90%prev.
Ataxia
Muito frequente (99-80%)
90%prev.
Anormalidade do olho
Muito frequente (99-80%)
90%prev.
Catarata
Muito frequente (99-80%)
55sintomas
Muito frequente (19)
Frequente (13)
Ocasional (8)
Sem dados (15)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 55 características clínicas mais associadas, ordenadas por frequência.

Atividade reduzida da fitanato oxidase em fibroblastos cultivadosReduced phytanic acid oxidase activity in cultured fibroblasts
Frequência: 20/20100%
Deficiência auditiva neurossensorialSensorineural hearing impairment
Muito frequente (99-80%)90%
Pele secaDry skin
Muito frequente (99-80%)90%
Ataxia
Muito frequente (99-80%)90%
Anormalidade do olhoAbnormality of the eye
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico26PubMed
Últimos 10 anos10publicações
Pico20232 papers
Linha do tempo
2025Hoje · 2026🧪 1992Primeiro ensaio clínico
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.

PEX7Peroxisomal targeting signal 2 receptorDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Receptor required for the peroxisomal import of proteins containing a C-terminal PTS2-type peroxisomal targeting signal (PubMed:11931631, PubMed:22057399, PubMed:25538232, PubMed:9090381). Specifically binds to cargo proteins containing a PTS2 peroxisomal targeting signal in the cytosol (PubMed:11931631, PubMed:22057399, PubMed:25538232). Cargo protein-binding triggers interaction with PEX5 and formation of a ternary complex composed of PEX5 and PEX7 along with PTS2-containing cargo proteins, wh

LOCALIZAÇÃO

Cytoplasm, cytosolPeroxisome matrix

VIAS BIOLÓGICAS (1)
Peroxisomal protein import
MECANISMO DE DOENÇA

Peroxisome biogenesis disorder complementation group 11

A peroxisomal disorder arising from a failure of protein import into the peroxisomal membrane or matrix. The peroxisome biogenesis disorders (PBD group) are genetically heterogeneous with at least 14 distinct genetic groups as concluded from complementation studies. Include disorders are: Zellweger syndrome (ZWS), neonatal adrenoleukodystrophy (NALD), infantile Refsum disease (IRD), and classical rhizomelic chondrodysplasia punctata (RCDP). ZWS, NALD and IRD are distinct from RCDP and constitute a clinical continuum of overlapping phenotypes known as the Zellweger spectrum (PBD-ZSS).

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
20.5 TPM
Glândula adrenal
18.8 TPM
Skin Sun Exposed Lower leg
17.0 TPM
Skin Not Sun Exposed Suprapubic
16.2 TPM
Estômago
14.2 TPM
OUTRAS DOENÇAS (3)
peroxisome biogenesis disorder 9Brhizomelic chondrodysplasia punctata type 1adult Refsum disease
HGNC:8860UniProt:O00628
PHYHPhytanoyl-CoA dioxygenase, peroxisomalDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the 2-hydroxylation of not only racemic phytanoyl-CoA and the isomers of 3-methylhexadecanoyl-CoA, but also a variety of other mono-branched 3-methylacyl-CoA esters (with a chain length of at least seven carbon atoms) and straight-chain acyl-CoA esters (with a chain length longer than four carbon atoms) (PubMed:10744784, PubMed:12031666, PubMed:12923223, PubMed:9326939). Does not hydroxylate long and very long straight chain acyl-CoAs or 2-methyl- and 4-methyl-branched acyl-CoAs (PubMe

LOCALIZAÇÃO

Peroxisome

VIAS BIOLÓGICAS (2)
Alpha-oxidation of phytanateTYSND1 cleaves peroxisomal proteins
MECANISMO DE DOENÇA

Refsum disease

A rare autosomal recessive peroxisomal disorder characterized by the accumulation of the branched-chain fatty acid, phytanic acid, in blood and tissues. Cardinal clinical features are retinitis pigmentosa, peripheral neuropathy, cerebellar ataxia, and elevated protein levels in the cerebrospinal fluid (CSF). Half of all patients exhibit generalized, mild to moderate ichthyosis resembling ichthyosis vulgaris. Less constant features are nerve deafness, anosmia, skeletal abnormalities, cataracts and cardiac impairment.

EXPRESSÃO TECIDUAL(Ubíquo)
Músculo esquelético
159.1 TPM
Fígado
102.4 TPM
Glândula adrenal
69.5 TPM
Coração - Ventrículo esquerdo
59.9 TPM
Rim - Córtex
53.7 TPM
OUTRAS DOENÇAS (1)
adult Refsum disease
HGNC:8940UniProt:O14832

Variantes genéticas (ClinVar)

302 variantes patogênicas registradas no ClinVar.

🧬 PEX7: NM_000288.4(PEX7):c.130+3G>C ()
🧬 PEX7: NM_000288.4(PEX7):c.64G>C (p.Ala22Pro) ()
🧬 PEX7: NM_000288.4(PEX7):c.903+2T>G ()
🧬 PEX7: NM_000288.4(PEX7):c.539dup (p.Arg181fs) ()
🧬 PEX7: NM_000288.4(PEX7):c.339+1G>A ()
Ver todas no ClinVar

Vias biológicas (Reactome)

3 vias biológicas associadas 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

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
3Fase 31
2Fase 21
·Pré-clínico5
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 7 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Doença de Refsum

🗺️

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

🟢 Recrutando agora

3 pesquisas recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

10 ensaios clínicos encontrados, 4 ativos.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

🥇Melhor nível de evidência: Revisão sistemática
Timeline de publicações
12 papers (10 anos)
#1

A unique case of microspherophakia in adult Refsum disease.

American journal of ophthalmology case reports2026 Mar

Adult Refsum disease (RD) is a rare autosomal recessive peroxisomal disorder with an estimated prevalence of fewer than 1 in 1 million. The ocular manifestations result from the accumulation of phytanic acid, leading to retinitis pigmentosa, attenuated retinal vessels, bone spicule pigmentation, optic disc pallor, and macular involvement in advanced stages. To date, there has been no documented association between RD and microspherophakia, a rare lens abnormality more commonly linked to Weill-Marchesani syndrome. Microspherophakia is characterized by a small lens diameter, increased anteroposterior thickness, and a visible lens equator upon full mydriasis. We present a unique case of concurrent RD and microspherophakia.

#2

Impaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.

Kidney medicine2025 Nov

Adult Refsum disease is a rare hereditary peroxisomal disorder characterized by impaired phytanic acid metabolism. The accumulation of phytanic acid in tissues, especially adipose and neural, is believed to contribute to disease manifestations. Clinically apparent kidney dysfunction has been reported in only 2 cases. We describe a 55-year-old woman with adult Refsum disease, who was referred to nephrology for impaired kidney function without proteinuria. Kidney biopsy showed vacuolization of proximal tubular epithelium and unremarkable glomeruli. Focally, distal tubular cytoplasm showed variably sized crystals with ultrastructural laminated substructures (or "paracrystalline formation"). To the best of our knowledge, the light microscopy for these crystals in a peroxisomal disease has not been previously described, and adult Refsum disease has not been described as a significant metabolic kidney disorder. These unique morphologic features contribute to the spectrum of findings in this rare genetic condition. This case also demonstrates the value of kidney function monitoring and therapeutic plasma exchange for these patients.

#3

Syndromic retinitis pigmentosa.

Progress in retinal and eye research2025 Jul

Retinitis pigmentosa (RP) is a progressive inherited retinal dystrophy, characterized by the degeneration of photoreceptors, presenting as a rod-cone dystrophy. Approximately 20-30% of patients with RP also exhibit extra-ocular manifestations in the context of a syndrome. This manuscript discusses the broad spectrum of syndromes associated with RP, pathogenic mechanisms, clinical manifestations, differential diagnoses, clinical management approaches, and future perspectives. Given the diverse clinical and genetic landscape of syndromic RP, the diagnosis may be challenging. However, an accurate and timely diagnosis is essential for optimal clinical management, prognostication, and potential treatment. Broadly, the syndromes associated with RP can be categorized into ciliopathies, inherited metabolic disorders, mitochondrial disorders, and miscellaneous syndromes. Among the ciliopathies associated with RP, Usher syndrome and Bardet-Biedl syndrome are the most well-known. Less common ciliopathies include Cohen syndrome, Joubert syndrome, cranioectodermal dysplasia, asphyxiating thoracic dystrophy, Mainzer-Saldino syndrome, and RHYNS syndrome. Several inherited metabolic disorders can present with RP, including Zellweger spectrum disorders, adult Refsum disease, α-methylacyl-CoA racemase deficiency, certain mucopolysaccharidoses, ataxia with vitamin E deficiency, abetalipoproteinemia, several neuronal ceroid lipofuscinoses, mevalonic aciduria, PKAN/HARP syndrome, PHARC syndrome, and methylmalonic acidaemia with homocystinuria type cobalamin (cbl) C disease. Due to the mitochondria's essential role in supplying continuous energy to the retina, disruption of mitochondrial function can lead to RP, as seen in Kearns-Sayre syndrome, NARP syndrome, primary coenzyme Q10 deficiency, SSBP1-associated disease, and long chain 3-hydroxyacyl-CoA dehydrogenase deficiency. Lastly, Cockayne syndrome and PERCHING syndrome can present with RP, but they do not fit the abovementioned hierarchy and are thus categorized as miscellaneous. Several first-in-human clinical trials are underway or in preparation for some of these syndromic forms of RP.

#4

Dilated cardiomyopathy revealing Refsum disease: a case report.

Journal of medical case reports2024 Sep 30

Refsum disease is a rare autosomal recessive hereditary disorder of lipid metabolism that results in the accumulation of phytanic acid. This syndrome is characterized with a range of classic symptoms including ataxia, peripheral neuropathy, amyotrophy, retinopathy, ichthyosis, and hearing loss. Later in life, individuals with Refsum disease may present cardiac manifestations, such as arrhythmias or conduction defects (first-degree atrioventricular block and bundle branch block) and hypertrophic or dilated cardiomyopathy, leading to heart failure and sudden death. To the best of our knowledge, this is the first case revealed by cardiac manifestations described in literature. We report the case of 38-year-old white Moroccan male who was admitted in our department for an acute decompensated heart failure episode. Transthoracic echocardiography found a dilated cardiomyopathy with a reduced ejection fraction at 15%. Further evaluation showed different features of Refsum disease. High plasma level of phytanic acid confirmed the diagnosis. Cardiac manifestations are frequent in the late course of the adult Refsum disease and include, cardiomyopathy, electrical abnormalities, and sudden cardiac death. Moreover, arrhythmias remain one of the main causes of death in these patients. Refsum's disease is an autosomal recessive disorder. It presents as retinitis pigmentosa with anosmia, deafness ataxia, and cardiac defects. Current interventions for individuals with Refsum disease consist of dietary phytanic acid restriction and lipid apheresis to control symptoms and enhance quality of life. What is now known as Refsum disease was initially described by Sigvald Refsum as heredoataxia hemeralopica polyneuritiformis in 1945, but its name was changed to heredopathia atactica polyneuritiformis the following year. Today, Refsum disease is synonymous with "adult Refsum disease" and "classic Refsum disease." The Online Catalog of Human Genes and Genetic Disorders (OMIM) records adult Refsum disease as phenotype MIM number #266500. The condition is rare, autosomal recessive, and classified as a disorder of peroxisomal function.  Peroxisomes are single membrane-bound intracellular organelles that generate peroxide for use in metabolic functions. Their functions are far-reaching and include a vast complement of lipid catabolism and biogenesis functions; the dysfunction in lipid catabolism is responsible for Refsum disease. The fundamental characteristic of disorders of peroxisome function is that they are due to a deficiency in the function of a single enzyme. This produces specific metabolic abnormalities. Refsum disease is caused by a deficiency of the phytanoyl-CoA hydroxylase, which results in deficient catabolism of phytanic acid and an excess. The core of Refsum disease's clinical characteristics is due to the effects of phytanic acid buildup on the nervous system. Since the terminology surrounding Refsum disease can be confusing, it is worth emphasizing that Refsum disease is distinct from infantile Refsum disease, which falls within the Zellweger spectrum disorders. These are classified as disorders of peroxisomal biogenesis and assembly. For more information on infantile Refsum disease, see StatPearls' companion topic, "Zellweger Spectrum Disorder."

#5

Adult Refsum Disease in Puerto Rico: A Case Report.

Cureus2023 Sep

Patients with adult Refsum Disease (ARD) have retinitis pigmentosa and thus nyctalopia, anosmia, sensorineural deafness, polyneuropathy, and ataxia. Upon physical examination, patients with ARD have congenital short metacarpals, metatarsals, and cardiac arrhythmias. Manifestations due to the lack of phytanoyl-CoA hydroxylase in peroxisomes needed for alpha-oxidation of phytanic acid lead patients to accumulate phytanic acid in their body tissues. To our knowledge, no consensus for clinical diagnostic criteria for patients with ARD has been published. Our patient had nyctalopia, retinal findings, and visual field results compatible with retinitis pigmentosa. Additionally, the patient had decreased macular thickness and volume in both eyes, the findings being worse in the left eye. The patient had undergone hand surgery due to chronic pain in both hands, as well as his fourth and fifth metatarsal bones were shortened. Interestingly, audiology evaluation showed mild hearing loss in the right ear and mild to moderate hearing loss in the left ear. Inheritance patterns in patients with ARD have been described. Physical examination, phytanic acid evaluation, and genetic studies may all help reach an ARD diagnosis. This is the first report of adult Refsum disease in Puerto Rico.

Publicações recentes

Ver todas no PubMed

Associações

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Comunidades

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Doenças relacionadas

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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.

  1. A unique case of microspherophakia in adult Refsum disease.
    American journal of ophthalmology case reports· 2026· PMID 41487288mais citado
  2. Impaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.
    Kidney medicine· 2025· PMID 41209174mais citado
  3. Syndromic retinitis pigmentosa.
    Progress in retinal and eye research· 2025· PMID 39733931mais citado
  4. Dilated cardiomyopathy revealing Refsum disease: a case report.
    Journal of medical case reports· 2024· PMID 39343965mais citado
  5. Adult Refsum Disease in Puerto Rico: A Case Report.
    Cureus· 2023· PMID 37859930mais citado
  6. Refsum Disease.
    · 2026· PMID 32809453recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:773(Orphanet)
  2. OMIM OMIM:266500(OMIM)
  3. MONDO:0009958(MONDO)
  4. GARD:5691(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Artigo Wikipedia(Wikipedia)
  8. Q177809(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

Doença de Refsum
Compêndio · Raras BR

Doença de Refsum

ORPHA:773 · MONDO:0009958
Prevalência
1-9 / 1 000 000
Casos
60 casos conhecidos
Herança
Autosomal recessive
CID-10
G60.1 · Doença de Refsum
CID-11
Ensaios
4 ativos
Início
Adolescent, Adult, Childhood
Prevalência
0.1 (Europe)
MedGen
UMLS
C0034960
EuropePMC
Wikidata
Wikipedia
Papers 10a
Evidência
🥇 Rev. sistemática
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