制度・支援
指定難病 — No.336

家族性低βリポタンパク血症1(ホモ接合体)

検索語 Homozygous Familial Hypobetalipoproteinemia ・ 最終更新 2026-07-22 19:19 ・ 最新に更新

Data Sheet
指定 No.336
Src PubMed · CT.gov · jRCT

これは医療アドバイスではありません。診断・治療の判断は必ず主治医にご相談ください。論文や治験は「今わかっている研究の状況」を示すもので、効果を保証するものではありません。

( 01 )EVIDENCE / PUBMED · 5件

世界の論文

直近の研究を、やさしい日本語で

各論文の見出しにある「確からしさ」は、その研究がどれくらい信頼できるかの目安です。「理論段階」はまだ仮説に近く、下にいくほど多くの患者で検証されていて、「メタ解析」がもっとも信頼できます。

観察研究
MK-01 · PMID 42399142

ビタミンK1は、遺伝子検査で特定の家族性低βリポタンパク血症を見つけやすくする目印になるか?:前向き観察研究と文献レビュー

Vitamin K1 as a screening marker to facilitate the genetic diagnosis of class I familial hypobetalipoproteinemia: A prospective cohort study with a systematic review analysis

Abstract / 原文

BACKGROUND: While low levels of LDL-cholesterol can be atheroprotective, homozygous Class I familial hypobetalipoproteinemia (Ho-Class I FHBL) and heterozygous Class I FHBL (He-Class I FHBL) due to APOB variants (i.e., heterozygous FHBL1 (HeFHBL1)) have serious complications due to genetic defects in the chylomicron/VLDL secretion pathway. However, Ho-Class I FHBL with milder phenotypes and HeFHBL1 are often underdiagnosed due to overlapping lipid profiles with other forms of hypobetalipoproteinemia. OBJECTIVE: Additional screening markers are warranted. METHODS: We established a prospective HBL cohort and performed detailed genotype-phenotype analyses to identify biomarkers associated with Class I FHBL. For further exploration, we systematically reviewed cases with Class I FHBL. RESULTS: In our lipid genome cohort (n = 440), whole-exome sequencing of 18 consecutive cases of HBL (LDL-C <30 mg/dL) identified 7 novel pathogenic variants in 7 cases of Class I FHBL. Genotype-phenotype analyses revealed that plasma vitamin K1 is the strongest independent predictor of Class I FHBL. The vitamin K1 levels in HeFHBL1 were significantly reduced by approximately 50% compared to controls, reflecting the half-normal lipoprotein secretion. Systematic review analyses (n = 472) revealed that vitamin K1 is the only fat-soluble vitamin that is significantly decreased not only in Ho-Class I FHBL but also in HeFHBL1. CONCLUSION: Plasma vitamin K1 may serve as a sensitive screening marker of fat malabsorption, facilitating the genetic diagnosis of Class I FHBL, enabling early management of its complications, such as fat malabsorption, fat-soluble vitamin deficiency, potential vitamin K deficiency, and steatotic liver disease.

今の治療への意味ビタミンK1の測定は、特定の遺伝子病の診断の手がかりになる可能性が示唆されていますが、現時点では診断の補助的な役割と考えられます。

これは病気の診断や治療法を決定するものではありません。必ず主治医にご相談ください。

Journal
Journal of clinical lipidology(2026 Jun)
Authors
11名
Type
Journal Article

440人を対象とした観察研究と、472人の過去の症例をまとめた文献レビューを組み合わせています。

PubMedで原文を見る
不明
MK-02 · PMID 41866072

遺伝子の異常による脂質異常症について

Genetic dyslipidemias

Abstract / 原文

Although genetic factors strongly influence lipid metabolism, genetic dyslipidemias refer to specific monogenic defects that significantly alter the function of proteins involved in lipid metabolism. Familial hypercholesterolemia results from mutations in the genes coding for LDL-receptor, apolipoprotein B100 (apoB100), PCSK9, or LDLRAP1. The rare homozygous form is severe, with extravascular lipid deposits at an early age and a high incidence of coronary events in childhood, in the absence of early diagnosis. The heterozygous form is more frequent and characterized by elevated plasma LDL-cholesterol levels (>190mg/dL in adults) and a very high risk of premature coronary artery disease (usually before the age of 50years). Familial chylomicronemia syndrome (FCS) is a major form of genetic hypertriglyceridemia caused by mutations in genes encoding lipoprotein lipase or one of its cofactors (apoC-II, apoA-V, GPIHBP1, or LMF1). Patients with FCS exhibit markedly elevated plasma triglyceride levels (>10mmol/L) and are at high risk for acute pancreatitis. Congenital familial partial lipodystrophy and glycogen storage diseases are two other forms of genetic hypertriglyceridemia. In addition, other rare genetic dyslipidemias have been described in humans, including familial dysbetalipoproteinemia, abetalipoproteinemia, familial hypobetalipoproteinemia, familial combined hypolipidemia, sitosterolemia, and hypoalphalipoproteinemias.

今の治療への意味遺伝性脂質異常症の全体像を理解するのに役立ちますが、個別の治療法に関する具体的な情報は含まれていません。

遺伝性疾患の診断や治療については、専門医にご相談ください。

Journal
Annales d'endocrinologie(2026 May)
Authors
1名
Type
Journal Article, Review

この論文は、遺伝子の異常による脂質異常症について解説した総説です。

PubMedで原文を見る
症例報告
MK-03 · PMID 40863416

無βリポタンパク血症のギリシャの家族における33年間の経過観察:中鎖脂肪酸の長期摂取による肝臓への影響は見られず

Thirty-Three Years Follow-Up of a Greek Family with Abetalipoproteinemia: Absence of Liver Damage on Long-Term Medium Chain Triglycerides Supplementation

Abstract / 原文

Background: The long-term clinical and laboratory results of a 33-year follow-up of a Greek family with abetalipoproteinemia (ABL) are described. Case Report: The patients (two brothers and their sister, aged 57, 49, and 62 years, respectively) are still alive, being under close surveillance. In two of the three patients, diarrhea appeared in early infancy, while in the third, it appeared during adolescence. CNS symptomatology worsened after the second decade of life. At the same time, night blindness appeared in the advanced stages of the disease, resulting in almost complete loss of vision in one of the male patients and severe impairment in the other. The diagnosis was based on the clinical picture, ophthalmological findings, serum lipid estimations, and presence of peripheral acanthocytosis. All patients exhibited typical serum lipidemic profile, ophthalmological findings, and acanthocytes in the peripheral blood. During the follow-up period, strict dietary modifications were applied, including the substitution of fat with medium-chain triglycerides (MCT oil). After 33 years since the initial diagnosis, all patients are alive without any sign of liver dysfunction despite continuous use of MCT oil. However, symptoms from the central nervous system and vision impairment worsened. Conclusion: The course of these patients suggests that the application of a modified diet, including MCT oil, along with close surveillance, could prolong the survival of patients without significant side effects from the liver.

今の治療への意味中鎖脂肪酸(MCTオイル)の摂取が、無βリポタンパク血症の患者さんの肝臓への負担を軽減する可能性が示唆されていますが、病気の進行を完全に抑えるものではありません。

この報告は特定の家族の例であり、全ての人に当てはまるわけではありません。食事療法については必ず主治医にご相談ください。

Journal
Journal of personalized medicine(2025 Aug)
Authors
10名
Type
Case Reports, Journal Article

3人の患者さんを33年間追跡した症例報告です。

PubMedで原文を見る
不明
MK-04 · PMID 40666781

低所得地域における無βリポタンパク血症の診断の手がかりとなる非典型的な網膜症

Atypical retinopathy as an important clue for abetalipoproteinemia diagnosis in a low-income setting

今の治療への意味眼科的な所見が、特定の病気の診断に役立つ可能性を示唆していますが、網膜症だけで診断が確定するわけではありません。

眼の症状については、眼科医および主治医にご相談ください。

Journal
Oman journal of ophthalmology(2025)
Authors
4名
Type
Journal Article

この論文は、無βリポタンパク血症の診断における網膜症の重要性について論じていますが、具体的な研究デザインは不明です。

PubMedで原文を見る
症例報告
MK-05 · PMID 40642817

皮膚移植を用いた上腕三頭筋の遅延修復:技術と症例

Delayed Tricep Repair Using Dermal Allograft: Technique and Case Examples

Abstract / 原文

An acellular dermal matrix is a biological graft composed of several components present in the dermis such as collagen fibers, elastin, fibronectin, and hyaluronic acid that serve as support for cellular repopulation that will gradually become vascularized. This provides mechanical resistance and improves suture retention. With this article we aim to present 2 cases, and our technique, in which a rupture of the distal triceps tendon occurred, patients presented late due to usual insurance authorization delays, and then required delayed surgical repair by means of dermal acellular matrix grafting in order to bridge the substantial gap due to tricep proximal retraction. The first case report describes a 55-year-old male with abetalipoproteinemia who suffered an unclear injury to his right triceps tendon and apparently an olecranon bursitis and/or tricep tendonitis. Surgical intervention involved exploring the triceps tendon, revealing degenerative tissue and a detached muscle belly that was unrepairable, necessitating immediate reconstruction with a dermal allograft. The poor quality of the triceps tendon, weakened by cortisone injections, precluded primary repair, highlighting the rationale for graft reconstruction. The second case concerns a 54-year-old male, a gym owner and amateur bodybuilder, who suffered a fracture of the lateral epicondyle with avulsion of the distal triceps following a motorcycle accident. The patient underwent surgery with end-to-end suturing of the tendon and augmentation of the suture using acellular dermal matrix. The successful use of a dermal allograft in surgical reconstruction presents a promising solution in cases with insufficient tendon quality.

今の治療への意味無βリポタンパク血症の患者さんで、上腕三頭筋の腱断裂が起きた場合に、皮膚移植による修復が選択肢となりうる可能性を示唆していますが、これは特殊な状況下での治療法です。

これは手術に関する報告であり、個々の治療方針は主治医と相談して決定する必要があります。

Journal
Techniques in hand & upper extremity surgery(2025 Sep)
Authors
5名
Type
Journal Article, Case Reports

2人の患者さんの手術例を報告しています。

PubMedで原文を見る
( 02 )TRIALS / JAPAN · 0件

日本で参加できる治験

現在 募集中のもの

日本で現在募集中の治験は見つかりませんでした。下の公式レジストリで条件を変えると見つかる場合があります。
( 03 )REGISTRY / jRCT

治験をもっと探す

日本の公式レジストリで全件を確認

上の一覧は ClinicalTrials.gov の一部です。日本国内の治験の多くは、日本の公式レジストリ jRCT にのみ登録されています。下記から最新の全件をご確認ください。

※ jRCTは自動の大量データ取得を禁じているため、本サービスはjRCTを自動収集せず、患者ご自身が公式サイトで検索できるリンクでご案内しています(規約順守)。

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( 04 )SUPPORT

患者会・相談窓口

一人で抱え込まないでください

同じ病気の患者・家族とつながる、制度や生活の相談をする、といったときの窓口です。

全国の相談先

※ お住まいの都道府県の「難病相談支援センター」でも、医療費助成や療養生活の相談ができます(難病情報センターから探せます)。