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.
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.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Entender a doença
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 18 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 55 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 recessive.
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
Cytoplasm, cytosolPeroxisome matrix
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).
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
Peroxisome
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.
Variantes genéticas (ClinVar)
302 variantes patogênicas registradas no ClinVar.
Vias biológicas (Reactome)
3 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 — Doença de Refsum
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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
🟢 Recrutando agora
3 pesquisas recrutando participantes. Converse com seu médico sobre a possibilidade de participar.
Outros ensaios clínicos
10 ensaios clínicos encontrados, 4 ativos.
Publicações mais relevantes
A unique case of microspherophakia in adult Refsum disease.
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.
Impaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.
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.
Syndromic retinitis pigmentosa.
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.
Dilated cardiomyopathy revealing Refsum disease: a case report.
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."
Adult Refsum Disease in Puerto Rico: A Case Report.
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
A unique case of microspherophakia in adult Refsum disease.
Impaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.
Syndromic retinitis pigmentosa.
Dilated cardiomyopathy revealing Refsum disease: a case report.
📚 EuropePMC13 artigos no totalmostrando 10
A unique case of microspherophakia in adult Refsum disease.
American journal of ophthalmology case reportsImpaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.
Kidney medicineSyndromic retinitis pigmentosa.
Progress in retinal and eye researchDilated cardiomyopathy revealing Refsum disease: a case report.
Journal of medical case reportsAdult Refsum Disease in Puerto Rico: A Case Report.
CureusPhytanic Acid Intake and Lifestyle Modifications on Quality of Life in Individuals with Adult Refsum Disease: A Retrospective Survey Analysis.
NutrientsPregnancy outcome in Refsum disease: Affected fetuses and children born to an affected mother.
JIMD reportsReversible vestibular neuropathy in adult Refsum disease.
NeurologySafety of long-term restrictive diets for peroxisomal disorders: vitamin and trace element status of patients treated for Adult Refsum Disease.
International journal of clinical practiceRefsum Disease Presenting with a Late-Onset Leukodystrophy.
JIMD reportsAssociações
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.
- A unique case of microspherophakia in adult Refsum disease.
- Impaired Kidney Function With Kidney Tubular Vacuolization and Crystals in Adult Refsum Disease: A Case Report.
- Syndromic retinitis pigmentosa.
- Dilated cardiomyopathy revealing Refsum disease: a case report.
- Adult Refsum Disease in Puerto Rico: A Case Report.
- Refsum Disease.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:773(Orphanet)
- OMIM OMIM:266500(OMIM)
- MONDO:0009958(MONDO)
- GARD:5691(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Artigo Wikipedia(Wikipedia)
- 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.
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