Frequently Asked Questions
Neuroendocrine Tumors and the NETest®
What are the signs & symptoms of NETs?
Flushing; frequent diarrhea (> 4 loose stools/day); wheezing; telangiecstasia (facial red spots); chronic abdominal cramping, pain and bloating; joint pain; fatigue.
What are the current diagnostic tests available to identify NETs?
Diagnosis of NETs is based on:
- Clinical symptoms
- Hormone levels – CgA; 5-HIAA (metabolite)
- Radiological and nuclear imaging – CT
- Histology – Ki67
- Molecular – NETest (Wren Laboratories, LLC)
Is there a cure for NETs?
While some types of tumors have been evidenced not to metastasize, those are the exception to the rule. Predominantly there is no known cure for NETs.
What if I have an unknown primary? How do I manage my NETs?
It is of utmost importance that you partner with a NETs specialist in the management of your disease. When the primary is unknown, the focus of treatment(s) turn toward the metastatic disease. Therapies are then decided based on the site of metastasis; the clinical symptoms; the tumor burden (amount of tumor) as well as the staging, differentiation and activity of the metastatic disease.
Where may I find and access the most current literature?
Please visit our Resource Library for the most current literature.
How rare is this disease?
The incidents of NETs is 3.6/100,000 persons. It actually occurs as frequently as testicular cancer, Hodgkin’s Disease, gliomas (brain tumors) and multiple myeloma. (Modlin, et al, 2013) – The general professional consensus is that because NETs presents as so many other health disorders, and as such, causes misdiagnosis, the disease may not be as rare as previously thought.
What are the current conventional therapies available to NETs patients?
- Surgical excision of tumor with resection of primary site
- Radiofrequency ablation
- Hepatic embolization (with chemo or bland spheres)
- Chemotherapy
- Octreotide analogs via injection
What studies are currently underway and how would I know they are right for me?
Yes, please contact Mark Kidd, PhD, DABCC or call 203-208-3464 for more information.
Is there such a thing as a surgical cure?
There have been cases of surgical removal of a Neuroendocrine Tumor (NET) tumor without further occurrence of the disease (i.e. appendix; ovary), however, it is very difficult for the surgeon to obtain “clear margins” when excising NETs as the disease usually remains present in the organ tissues at a molecular level.
Is there such a thing as a Neuroendocrine Tumor (NET) Center for Excellence?
Yes, please contact Mark Kidd, PhD, DABCC or call 203-208-3464 for more information.
NETest®
Who can use the tests?
Any European or US physician can order a test online. Once registered, European physicians can only order tests for patients in Europe. US physicians can only order tests for patients in the USA. If you are a physician interested in the test but are outside Europe or the USA, please contact us directly for advice on how to order the NETest.®
When should a physician use the NETest?
The NETest® was developed as an in vitro diagnostic that can be used to monitor neuroendocrine tumour disease. Physicians typically use the NETest® to evaluate whether a patient has residual disease after surgery, to monitor patients during watch-and-wait programs and to test if a treatment is working. Please click this link to obtain an overview of when the NETest® could be used during your patient journey.
Where are the tests available?
Throughout Europe and the USA. If you are a physician outside of Europe or the USA, please order a test here.
Who should have a test?
The tests are undertaken in subjects with neuroendocrine tumour (NET) diseases who require an individualized assessment of disease risk. The test has been developed for all types of NET disease including stomach, lung, pancreas, appendix and bowel. Patients with a CUP can also use the test. Patients are usually 18 or older. In cases where someone is under 18, the ordering physician should discuss use with Wren Laboratories directly.
Are other tests available?
Wren Laboratories has also developed a test – the PPQ or PRRedicTor test – to predict the likelihood of a response to PRRT therapy. If you are interested in this, please contact us directly.
Is the test CE Marked? (Europe Only)
The NETest® is not currently CE Marked and is made available exclusively on a Research Use Only basis.
Blood Collection and Sendout
What is included in the kit?
Each kit includes a blood collection tube, instructions for collecting the blood sample, a requisition form that the physician will need to fill in and sign, a brief patient history form that needs completion, as well as instructions regarding sending it to the laboratory for analysis. If you require tracking information for the kit, please request this directly from us and we will provide it.
What if I have lost the collection instructions/patient form etc?
If you have misplaced the instructions, the kit, or the requisition forms please contact us.
How should the blood be collected and sent to the lab?
At least 2 ml of blood should be drawn into the provided tube. Please include the appropriate patient identifiers on the tube. Once the collection is complete, either send the sample within 24 hours or freeze the sample at -80°C (NOT a normal refrigerator freezer) until send-out. Please send the sample on the same or on next day to the laboratory using the kit provided. Shipping is at ambient temperature. NO DRY ICE IS NEEDED. Please remember to include the order form that you signed in the kit.
If you are conducting a study and are collecting several patient samples over a period of time and want to batch send the samples in one delivery, please freeze all collected tubes in a -80°C freezer (NOT a normal refrigerator freezer). Samples should be frozen within 24 hrs of collection. Once sufficient samples are collected (e.g., 20), please send to the laboratory by courier at ambient temperature using the kit box provided.
What is needed to send a kit to Wren?
Each kit includes a pre-paid FEDEX label and a white polystyrene box.
Please ensure the blood sample is placed into the box.
Please include the box containing the blood sample tube, a fully completed and signed requisition form and the brief patient history form.
Please include any relevant clinical notes related to ordering the test (physician notes/clinical history).
Please call FEDEX, and they will send someone to your office to pick up the kit.
Testing Results
How is data processed?
The blood sample is processed and the neuroendocrine tumour gene expression quantified in laboratories in either the US or in the UK. The individual target gene data is processed using secure servers and proprietary algorithm analyses. The final output is provided in a report, as a score from 0-100 where 0 is the lowest risk and 100 is the highest risk.
What does the report mean?
The NETest report includes a number which is your patient’s score. This ranges from 0 to 100. Scores from 0-20 fall into the normal category. Scores that range 21-40 fall into the stable disease category. Scores from 41-100 fall into the progressive disease category. Literature about the NETest, how it was developed and how it provides clinical utility is included in your report. Click here for a sample of the NETest report.
How will I receive the result?
The result will be sent to you, the ordering physician, by secure email. If you do not receive the result, a hardcopy can be sent to you via USPS. If you have not received a patient report, please contact us directly.
How accurate are the results?
The NETest score has been validated in thousands of patients and published in over 20 articles. The overall accuracy as a diagnostic is 96%. The PPQ test has been recently developed and demonstrated to be 94-99% accurate for predicting a response to PRRT.
Feedback
Where can I leave feedback?
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