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Scalp-ear-nipple syndrome(SENS)

MedGen UID:
357183
Concept ID:
C1867020
Disease or Syndrome
Synonyms: Finlay-Marks Syndrome; Hereditary syndrome of lumpy scalp, odd ears and rudimentary nipples; Sen Syndrome; SENS
SNOMED CT: Scalp, ear, nipple syndrome (721888002); Finlay Marks syndrome (721888002)
Modes of inheritance:
Autosomal dominant inheritance
MedGen UID:
141047
Concept ID:
C0443147
Intellectual Product
Source: Orphanet
A mode of inheritance that is observed for traits related to a gene encoded on one of the autosomes (i.e., the human chromosomes 1-22) in which a trait manifests in heterozygotes. In the context of medical genetics, an autosomal dominant disorder is caused when a single copy of the mutant allele is present. Males and females are affected equally, and can both transmit the disorder with a risk of 50% for each child of inheriting the mutant allele.
 
Gene (location): KCTD1 (18q11.2)
 
Monarch Initiative: MONDO:0008404
OMIM®: 181270
Orphanet: ORPHA2036

Definition

Scalp-ear-nipple syndrome is characterized by aplasia cutis congenita of the scalp, breast anomalies that range from hypothelia or athelia to amastia, and minor anomalies of the external ears. Less frequent clinical characteristics include nail dystrophy, dental anomalies, cutaneous syndactyly of the digits, and renal malformations. Penetrance appears to be high, although there is substantial variable expressivity within families (Marneros et al., 2013). [from OMIM]

Additional description

From MedlinePlus Genetics
Scalp-ear-nipple syndrome, as its name suggests, is a condition characterized by abnormalities of the scalp, ears, and nipples. Less frequently, affected individuals have problems affecting other parts of the body. The features of this disorder can vary even within the same family.

Babies with scalp-ear-nipple syndrome are born with a condition called aplasia cutis congenita, which involves patchy abnormal areas (lesions) on the scalp. These lesions are firm, raised, hairless nodules that resemble open wounds or ulcers at birth, but that heal during childhood.

The external ears of people with scalp-ear-nipple syndrome may be small, cup-shaped, folded over, or otherwise mildly misshapen. Hearing is generally normal. Affected individuals also have nipples that are underdeveloped (hypothelia) or absent (athelia). In some cases the underlying breast tissue is absent as well (amastia).

Other features that can occur in this disorder include malformed and brittle fingernails and toenails (nail dystrophy), dental abnormalities including widely-spaced or missing teeth, fusion of the skin between some of the fingers and toes (cutaneous syndactyly), and kidney defects such as underdevelopment (hypoplasia) of one or both kidneys. Unusual facial features, including narrowed openings of the eyes (narrowed palpebral fissures), an increased distance between the inner corners of the eyes (telecanthus), a flat bridge of the nose, and nostrils that open to the front rather than downward (anteverted nares), can also occur in this disorder.  https://medlineplus.gov/genetics/condition/scalp-ear-nipple-syndrome

Clinical features

From HPO
Blepharophimosis
MedGen UID:
2670
Concept ID:
C0005744
Congenital Abnormality
A fixed reduction in the vertical distance between the upper and lower eyelids with short palpebral fissures.
Developmental cataract
MedGen UID:
3202
Concept ID:
C0009691
Congenital Abnormality
A cataract that occurs congenitally as the result of a developmental defect, in contrast to the majority of cataracts that occur in adulthood as the result of degenerative changes of the lens.
Hypertensive disorder
MedGen UID:
6969
Concept ID:
C0020538
Disease or Syndrome
The presence of chronic increased pressure in the systemic arterial system.
Pyelonephritis
MedGen UID:
19590
Concept ID:
C0034186
Disease or Syndrome
An inflammation of the kidney involving the parenchyma of kidney, the renal pelvis and the kidney calices.
Microtia
MedGen UID:
57535
Concept ID:
C0152423
Congenital Abnormality
Underdevelopment of the external ear.
Abnormal hair morphology
MedGen UID:
56381
Concept ID:
C0157733
Finding
An abnormality of the hair.
Palpebral edema
MedGen UID:
57877
Concept ID:
C0162285
Pathologic Function
Edema in the region of the eyelids.
Low-set ears
MedGen UID:
65980
Concept ID:
C0239234
Congenital Abnormality
Upper insertion of the ear to the scalp below an imaginary horizontal line drawn between the inner canthi of the eye and extending posteriorly to the ear.
Iris coloboma
MedGen UID:
116097
Concept ID:
C0240063
Anatomical Abnormality
A coloboma of the iris.
Breast aplasia
MedGen UID:
539633
Concept ID:
C0266009
Congenital Abnormality
Failure to develop and congenital absence of the breast.
Renal hypoplasia
MedGen UID:
120571
Concept ID:
C0266295
Congenital Abnormality
Hypoplasia of the kidney.
Aplasia cutis congenita
MedGen UID:
79390
Concept ID:
C0282160
Congenital Abnormality
Aplasia cutis congenita (ACC) is defined as congenital localized absence of skin. The skin appears as a thin, transparent membrane through which the underlying structures are visible. The location is usually on the scalp (Evers et al., 1995). Approximately 20 to 30% of cases have underlying osseous involvement (Elliott and Teebi, 1997). Autosomal dominant inheritance is most common, but recessive inheritance has also been reported. Cutaneous aplasia of the scalp vertex also occurs in Johanson-Blizzard syndrome (243800) and Adams-Oliver syndrome (AOS; 100300). A defect in the scalp is sometimes found in cases of trisomy 13 and in about 15% of cases of deletion of the short arm of chromosome 4, the Wolf-Hirschhorn syndrome (WHS; 194190) (Hirschhorn et al., 1965; Fryns et al., 1973). Evers et al. (1995) provided a list of disorders associated with aplasia cutis congenita, classified according to etiology. They also tabulated points of particular significance in history taking and examination of patients with ACC.
Mandibular prognathia
MedGen UID:
98316
Concept ID:
C0399526
Finding
Abnormal prominence of the chin related to increased length of the mandible.
Fine hair
MedGen UID:
98401
Concept ID:
C0423867
Finding
Hair that is fine or thin to the touch.
Hypotelorism
MedGen UID:
96107
Concept ID:
C0424711
Finding
Interpupillary distance less than 2 SD below the mean (alternatively, the appearance of an decreased interpupillary distance or closely spaced eyes).
Renal agenesis
MedGen UID:
154237
Concept ID:
C0542519
Congenital Abnormality
Agenesis, that is, failure of the kidney to develop during embryogenesis and development.
Epicanthus
MedGen UID:
151862
Concept ID:
C0678230
Congenital Abnormality
Epicanthus is a condition in which a fold of skin stretches from the upper to the lower eyelid, partially covering the inner canthus. Usher (1935) noted that epicanthus is a normal finding in the fetus of all races. Epicanthus also occurs in association with hereditary ptosis (110100).
Abnormality of the nail
MedGen UID:
163115
Concept ID:
C0853087
Anatomical Abnormality
Abnormality of the nail.
Agenesis of permanent teeth
MedGen UID:
224851
Concept ID:
C1290511
Congenital Abnormality
A congenital defect characterized by the absence of one or more permanent teeth, including oligodontia, hypodontia, and adontia of the of permanent teeth.
Renal insufficiency
MedGen UID:
332529
Concept ID:
C1565489
Disease or Syndrome
A reduction in the level of performance of the kidneys in areas of function comprising the concentration of urine, removal of wastes, the maintenance of electrolyte balance, homeostasis of blood pressure, and calcium metabolism.
Nail dysplasia
MedGen UID:
331737
Concept ID:
C1834405
Congenital Abnormality
The presence of developmental dysplasia of the nail.
Depressed nasal bridge
MedGen UID:
373112
Concept ID:
C1836542
Finding
Posterior positioning of the nasal root in relation to the overall facial profile for age.
Anteverted nares
MedGen UID:
326648
Concept ID:
C1840077
Finding
Anteriorly-facing nostrils viewed with the head in the Frankfurt horizontal and the eyes of the observer level with the eyes of the subject. This gives the appearance of an upturned nose (upturned nasal tip).
Small earlobe
MedGen UID:
334587
Concept ID:
C1842680
Finding
Reduced volume of the earlobe.
Cupped ear
MedGen UID:
335186
Concept ID:
C1845447
Congenital Abnormality
Laterally protruding ear that lacks antihelical folding (including absence of inferior and superior crura).
Protruding ear
MedGen UID:
343309
Concept ID:
C1855285
Finding
Angle formed by the plane of the ear and the mastoid bone greater than the 97th centile for age (objective); or, outer edge of the helix more than 2 cm from the mastoid at the point of maximum distance (objective).
Short columella
MedGen UID:
341783
Concept ID:
C1857479
Finding
Reduced distance from the anterior border of the naris to the subnasale.
Narrow palpebral fissure
MedGen UID:
382506
Concept ID:
C2675021
Finding
Reduction in the vertical distance between the upper and lower eyelids.
Aplasia/Hypoplasia of the nipples
MedGen UID:
461436
Concept ID:
C3150086
Finding
Underdeveloped tragus
MedGen UID:
861866
Concept ID:
C4013429
Anatomical Abnormality
Decreased posterolateral protrusion of the tragus.
Underdeveloped antitragus
MedGen UID:
866832
Concept ID:
C4021186
Anatomical Abnormality
Reduction in the anterosuperior prominence of the area between the bottom of the incisura and the inner margin of the antihelix.
Abnormal thorax morphology
MedGen UID:
867424
Concept ID:
C4021797
Anatomical Abnormality
Any abnormality of the thorax (the region of the body formed by the sternum, the thoracic vertebrae and the ribs).
3-4 finger cutaneous syndactyly
MedGen UID:
868712
Concept ID:
C4023115
Congenital Abnormality
A soft tissue continuity in the A/P axis between fingers 3 and 4.
Abnormality of the endocrine system
MedGen UID:
893021
Concept ID:
C4025823
Anatomical Abnormality
An abnormality of the endocrine system.
2-3 toe syndactyly
MedGen UID:
1645640
Concept ID:
C4551570
Congenital Abnormality
Syndactyly with fusion of toes two and three.
Sparse hair
MedGen UID:
1790211
Concept ID:
C5551005
Finding
Reduced density of hairs.

Term Hierarchy

CClinical test,  RResearch test,  OOMIM,  GGeneReviews,  VClinVar  
  • CROGVScalp-ear-nipple syndrome
Follow this link to review classifications for Scalp-ear-nipple syndrome in Orphanet.

Recent clinical studies

Etiology

Lu ZW, Liu YY, Li YG, Lv LL
J Cardiothorac Surg 2023 Jul 5;18(1):217. doi: 10.1186/s13019-023-02304-3. PMID: 37408079Free PMC Article
Bauer DJ, Matic V, Mare R, Maiocchi L, Chromy D, Müllner-Bucsics T, Mandorfer M, Mustapic S, Sporea I, Ferraioli G, Grgurevic I, Reiberger T
Ultraschall Med 2023 Apr;44(2):169-178. Epub 2022 Feb 28 doi: 10.1055/a-1724-7289. PMID: 35226932Free PMC Article

Diagnosis

Lu ZW, Liu YY, Li YG, Lv LL
J Cardiothorac Surg 2023 Jul 5;18(1):217. doi: 10.1186/s13019-023-02304-3. PMID: 37408079Free PMC Article
Bauer DJ, Matic V, Mare R, Maiocchi L, Chromy D, Müllner-Bucsics T, Mandorfer M, Mustapic S, Sporea I, Ferraioli G, Grgurevic I, Reiberger T
Ultraschall Med 2023 Apr;44(2):169-178. Epub 2022 Feb 28 doi: 10.1055/a-1724-7289. PMID: 35226932Free PMC Article
Butler KM, Bahrambeigi V, Merrihew A, Friez MJ, Cathey SS
Clin Dysmorphol 2021 Oct 1;30(4):167-172. doi: 10.1097/MCD.0000000000000387. PMID: 34456244
Ito R, Yamamoto Y, Maeda T, Ishikawa K, Funayama E
Congenit Anom (Kyoto) 2021 Jul;61(4):142-143. Epub 2021 Apr 18 doi: 10.1111/cga.12416. PMID: 33830564
Naik P, Kini P, Chopra D, Gupta Y
Am J Med Genet A 2012 Jul;158A(7):1696-701. Epub 2012 May 25 doi: 10.1002/ajmg.a.35389. PMID: 22639454

Prognosis

Naik P, Kini P, Chopra D, Gupta Y
Am J Med Genet A 2012 Jul;158A(7):1696-701. Epub 2012 May 25 doi: 10.1002/ajmg.a.35389. PMID: 22639454

Clinical prediction guides

Lu ZW, Liu YY, Li YG, Lv LL
J Cardiothorac Surg 2023 Jul 5;18(1):217. doi: 10.1186/s13019-023-02304-3. PMID: 37408079Free PMC Article

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