• Test Code:
    1145
  • Department:
  • Test Synonyms:
    C19orf12NBIA
  • CPT Code(s):
    81479
Background:

Mitochondrial membrane Protein-Associated Neurodegeneration (MPAN) is characterized by progressive dystonia, spasticity, paraparesis or tetraparesis, optic atrophy, psychiatric changes (ADHD-like behavior, mood swings), and evidence of iron accumulation in both the globus pallidus and substantia nigra on T2-weighted MRI.  Onset generally occurs in childhood to early adulthood with slow progression and survival well into adulthood.

MPAN is observed in ~10% of NBIA patients and mutations in c19orf12 are observed in 95% of patients with a clinical diagnosis of MPAN.  Mutations in MMIN are observed in ~40% of patients with a negative mutation test for other NBIA-associated genes, eg. PANK2, PLA2G6, CP and FTL (Hartig et al. 2011).

 

Reasons for Referral:

  • Confirmation of a suspected diagnosis in patients with the hallmark findings of MPAN.
  • Further assessment of patients with clinical diagnosis of idiopathic Neurodegeneration with Brain Iron Accumulation (NBIA) who do not have an eye-of-the-tiger sign and/or have had mutations ruled out in PANK2 or PLA2G6.
  • Carrier testing of family members of MPAN patients with known mutations.

Methodology:

Sequencing using either Sanger Sequencing or Next-Generation Sequencing.

Sanger Sequencing:  Sequencing of c19orf12 is carried out by amplification of all exons and intron/exon boundaries followed by bi-directional Sanger sequencing. The sensitivity of full gene sequencing is estimated to be approximately 99% for single nucleotide substitutions and small insertions/deletions.  All nucleotide changes are analyzed within the context of current databases and literature to predict pathogenicity.

NGS:  Next generation sequencing will analyze the exons or coding regions of c19orf12 using Illumina NextSeq 500/550 technology.  Samples are prepared using hybridization probes to enrich exonic regions.  This assay does not assess regions of insufficient coverage, introns and promoter regions; pseudogenes; where the reference genome is inaccurate or contains gaps and insertions; and regions of high GC or polynucleotide repeats, but may contain variants that impact gene function.

Exon-level deletion/duplication analysis is performed by running the NGS data through the Genome Analysis Toolkit (GATK) Germline Copy Number Variation best practices pipeline from GATK, version 4.1.4.1. A Bayesian model was validated clinically in our lab. The model can detect copy changes at a resolution of three (3) or more probe targets (exons) for deletions and duplications in genes that do not have pseudogenes, and is not designed to detect low-level mosaicism or balanced alterations.

Specimen Requirements:

Blood: EDTA or ACD (Solution A or B):

  • Adult:  5mL
  • Child:  5mL
  • Infant:  2-3mL

Saliva: 2 ORAgene™ Saliva Collection Kits (OGR-500) used according to manufacturer instructions.  Please contact KDL Client Services for a Saliva Collection Kit for patients that cannot provide a blood sample.

Assisted Saliva: 4 ORAgene™ Assisted Saliva Collection Kits (OGR-575) used according to manufacturer instructions.  Please contact KDL Client Services for an Assisted Saliva Collection Kit for patients that cannot provide a blood sample.

Skin Fibroblast: Punch Biopsy (Cell cultures will be prepared at KDL and used for testing), or 2 T-25 confluent flasks

DNA: 5-10µg at a minimum of 60-100ng/µL (DNA must be extracted in a CLIA-certified laboratory or a laboratory meeting equivalent requirements as determined by the CAP and/or CMS)

Prenatal:

  • Direct Amniotic Fluid (10-20mL)
  • Direct CVS
  • Direct POC
  • Cultured Amniocytes (2 T-25 flasks)
  • Cultured CVS (2 T-25 flasks)
  • Cultured Fetal Tissue: Product of Conception (2 T-25 flasks)
  • Cord Blood (1-2 mL)
Notice Regarding Molecular Genetic Testing on Prenatal Specimens:
  • Maternal cell rule-out testing will be performed on all prenatal specimens received.  Please provide maternal blood (or saliva) in addition to the fetal specimen. Additional charges apply for the maternal cell rule-out test.

  • For routine testing of blood and saliva (or DNA extracted from them), KDL does NOT accept samples from patients within two (2) weeks of a packed cell/platelet transfusion or within four (4) weeks of a whole blood transfusion.  For extraordinary circumstances, where testing must be performed outside of the above windows, please contact our lab.

    A REQUISITION FORM MUST ACCOMPANY ALL SAMPLES. Please include detailed clinical information, including ethnicity, clinical history, and family history.

    Test Performed (Days):

    Weekly

    Turn Around Time:

    14 – 21 days

    Shipment Sensitivity Requirements:

    • Keep specimen cold during transit, but do not ship on dry ice. 
    • Please contact Client Services at (855) 535-1522 for shipping kits and instructions. 
    • Use the cold pack provided in the KDL shipping kit. 
    • Ship the specimen via overnight express, using the FedEx priority overnight label provided.

    References:

    1. Hartig MB, Iuso A, Haack T, et al.  Absence of an orphan mitochondrial protein, c19orf12, causes a distinct clinical subtype of neurodegeneration with brain iron accumulation.  Am J Hum Genet. 2011 Oct 7;89(4):543-50.

    Additional Info:

    The Knight Cancer Institute at Oregon Health & Science University is a pioneer in the field of precision cancer medicine. The institute's director, Brian Druker, M.D., helped prove it was possible to shut down just the cells that enable cancer to grow. This breakthrough has made once-fatal forms of the disease manageable and transformed how cancer is treated. The OHSU Knight Cancer Institute is the only National Cancer Institute-designated Cancer Center between Sacramento and Seattle – an honor earned only by the nation's top cancer centers. It is headquarters for one of the National Cancer Institute's largest research collaboratives, SWOG, in addition to offering the latest treatments and technologies as well as hundreds of research studies and clinical trials.

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