Test Code NCLW Neuronal Ceroid Lipofuscinosis, Two-Enzyme Panel, Leukocytes
Ordering Guidance
This blood test is an appropriate first step for individuals between 0 and 4 years of age who present with symptoms consistent with neuronal ceroid lipofuscinosis.
Shipping Instructions
For optimal isolation of leukocytes, it is recommended the specimen arrive refrigerated within 6 days of collection to be stabilized. Collect specimen Monday through Thursday only and not the day before a holiday. Specimen should be collected and packaged as close to shipping time as possible.
Necessary Information
1. Patient's age is required.
2. Reason for testing is required.
Specimen Required
Container/Tube:
Preferred: Yellow top (ACD solution B)
Acceptable: Yellow top (ACD solution A) or lavender top (EDTA)
Specimen Volume: 6 mL
Collection Instructions: Send whole blood specimen in original tube. Do not aliquot.
Forms
1. New York Clients-Informed consent is required. Document on the request form or electronic order that a copy is on file. The following documents are available:
-Informed Consent for Genetic Testing (T576)
-Informed Consent for Genetic Testing-Spanish (T826)
2. Biochemical Genetics Patient Information (T602)
3. If not ordering electronically, complete, print, and send a Biochemical Genetics Test Request (T798) with the specimen.
Useful For
Supporting the biochemical diagnosis of two neuronal ceroid lipofuscinoses, CLN1 and CLN2 in whole blood specimens
This test is not useful for carrier detection.
Special Instructions
Method Name
Liquid Chromatography Tandem Mass Spectrometry (LC-MS/MS)
Reporting Name
CLN1 and CLN2, WBCSpecimen Type
Whole Blood ACDSpecimen Minimum Volume
5 mL
Specimen Stability Information
Specimen Type | Temperature | Time | Special Container |
---|---|---|---|
Whole Blood ACD | Refrigerated (preferred) | 6 days | |
Ambient | 6 days |
Reference Values
Palmitoyl-protein thioesterase 1: >10.0 nmol/h/mg protein
Tripeptidyl peptidase 1: >20.0 nmol/h/mg protein
An interpretative report will be provided.
Interpretation
Abnormal results are not sufficient to establish a diagnosis of a particular disease. To verify a preliminary diagnosis based on this assay, additional biochemical or molecular genetic analyses are required.
When abnormal results are detected, a detailed interpretation is given, including an overview of the results and of their significance, a correlation to available clinical information, elements of differential diagnosis, recommendations for additional biochemical testing, and in vitro, confirmatory studies (enzyme assay, molecular analysis), and a phone number to reach one of the laboratory directors in case the referring physician has additional questions.
Clinical Reference
1. Hofmann SL, Peltonen L. The neuronal ceroid lipofuscinoses. In: Valle DL, Antonarakis S, Ballabio A, Beaudet AL, Mitchell GA. eds. The Online Metabolic and Molecular Bases of Inherited Disease. McGraw-Hill; Accessed July 17, 2023. Available at https://ommbid.mhmedical.com/content.aspx?bookid=2709§ionid=225548100
2. Kohlschutter A, Schulz A, Bartsch U, Storch S. Current and emerging treatment strategies for neuronal ceroid lipofuscinoses. CNS Drugs. 2019;33(4):315-325. doi:10.1007/s40263-019-00620-8
Day(s) Performed
Preanalytical processing: Monday through Saturday
Testing performed: Tuesday
Report Available
8 to 15 daysPerforming Laboratory
Mayo Clinic Laboratories in RochesterTest Classification
This test was developed and its performance characteristics determined by Mayo Clinic in a manner consistent with CLIA requirements. It has not been cleared or approved by the US Food and Drug Administration.CPT Code Information
82657
LOINC Code Information
Test ID | Test Order Name | Order LOINC Value |
---|---|---|
NCLW | CLN1 and CLN2, WBC | 93704-5 |
Result ID | Test Result Name | Result LOINC Value |
---|---|---|
BG773 | Reason for Referral | 42349-1 |
618471 | Palmitoyl-protein thioesterase 1 | 74935-8 |
618472 | Tripeptidyl peptidase 1 | 76038-9 |
618473 | Interpretation | 59462-2 |
618470 | Reviewed By | 18771-6 |