Welcome to TestFSHD

The FSHD Society has teamed up with Genome Medical to help you get genetic counseling and testing. Genome Medical’s genetics experts can review your personal and/or family history , discuss genetic testing options, and help coordinate genetic testing that may be appropriate for you.

Genetic testing may help you understand your risk for Facioscapulohumeral muscular dystrophy (FSHD), or may support a diagnosis and treatment plan.

Schedule an appointment to start working with a certified genetic counselor to get expert guidance and support, all from the comfort of your own home.

Schedule an Appointment

Meet with a board-certified genetic counselor in less than one week. Appointments are delivered via a 30-60 minute phone call.

Your appointment may be covered by your health insurance. We also offer an affordable self-pay option for those who prefer to pay out-of-pocket.

View a list of in-network insurance providers in the FAQs below. Note: Cost does not include genetic testing.

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Expertise You Can Trust

Genome Medical is a medical practice specializing in telehealth genetic services. Our clinical team includes experienced genetic counselors, medical geneticists, pharmacists and other specialists who provide care across all 50 states.

What to Expect

Initial Consultation

Talk with a genetic counselor by phone to review your personal and family health history and answer any questions you may have so you can decide if genetic testing is right for you.

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Genetic Testing

If you decide to proceed with testing, Genome Medical will assist you in coordinating sample collection. When the sample is collected and received by the lab, they will begin the genetic testing.

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Results Sent to You

When your results are ready, Genome Medical will contact you. Results are ready approximately 2-4 weeks from the time your sample arrives at the lab.

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Results Consultation

Review your test results with a genetic counselor. During this phone session, you can discuss the results of your test and what they may mean for you and your family. Afterwards, you’ll receive a written summary and guidance on next steps.

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Frequently Asked Questions

Genetic counselors are healthcare professionals with education focused on medical genetics and counseling. Genetic counselors are specifically trained to:
  • Help you understand how your personal and family medical history may impact your health
  • Discuss genetic testing options that may be appropriate for you
  • Explain what genetic test results mean for you and your family members
  • Address any questions or concerns you have about genetic testing
  • Provide recommendations for you and your healthcare provider to make medical decisions that may lower your risk

Genetic testing for FSHD is complex and unique in that currently comprehensive testing can only be ordered through the University of Iowa Diagnostic Lab (UIDL). Please follow the directions below to best prepare for your genetic counseling visit and to help us make your genetic testing experience as seamless as possible.

  1. Determine if your insurance is in network with UIDL by reviewing the list of in network providers here: https://uihc.org/ui-health-care-insurance-contract-list
  2. If your insurance is not in network, please anticipate that you will need to self-pay for the cost of genetic testing and prepayment is required by UIDL. Self-pay prices may be found under the Patient (self pay) section of UIDL’s FSHD1/2 information page here. Please note that typically, FSHD1 and FSHD2 panel testing are both ordered unless there is already positive genetic testing in the family that confirms type. UIDL will start with optical mapping and if that is abnormal (confirming a diagnosis of FSHD1), they will credit back the remainder of the prepayment fees for full panel testing and only the fee for optical mapping will be charged.
  3. If your insurance is in-network, please ask your insurance provider if prior authorization (PA) is required. Please ask about and note PA requirements for all of the following tests and corresponding CPT codes:
    1. Detection of Abnormal Alleles (Optical Mapping) – CPT 81404
    2. Methylation Status – CPT 81479
    3. NGS (SMCHD1, LRIF1, and DMNT3B) – CPT 81479
    4. Professional Interpretation – CPT G0452
  4. Explain your indication for testing (personal symptoms – ICD10: G71.01 or family history of genetic condition – Z84.81). Your insurance may also ask for the following reference numbers for UIDL:
    1. TIN: 42-6004813
    2. NPI (Technical): 1811984636
    3. NPI (Professional): 1265433676
  5. If PA is required, please ask your insurer how PA should be initiated and if there are any forms to be completed.

We appreciate that this process is complex and hope that taking these steps will enable you to have a clear understanding of what to expect from the genetic testing billing process. Thanks for your upfront efforts to ensure a smooth testing process.

  • Gather your personal and family health history. Talk to family members about any health conditions in the family, as well as the age that relatives were diagnosed.
  • If you or a family member have had genetic testing, please upload a copy of the result/s to your Genome Medical patient portal before your appointment. You will get access to the patient portal once you schedule your appointment. This is very important to ensure your genetic counselor can prepare for your appointment.
  • Think about questions you may have for your genetic counselor.

You will receive a phone call from your genetic counselor at the time of your scheduled appointment. Appointments are typically 30-60 minutes.

During the appointment, your genetic counselor will review your personal and family medical history, assess your risk for inherited genetic conditions, and may discuss the benefits and limitations of genetic testing. Your genetic counselor will also address your concerns or questions about genetic testing. If genetic testing is performed, your genetic counselor can explain what your results mean for you and your family.

We are an in-network provider with most commercial health insurance plans. See a list below. Coverage and pricing may vary. Please contact your insurance provider for your exact coverage and payment responsibility. Reference insurance CPT codes 96041 and S0265 and our NPI number 1407389695.

If you use insurance, and we are in-network with your health plan, we will submit a claim on your behalf. You may get a bill for any outstanding balance depending on your coverage. At this time, we do not accept government-affiliated insurance providers including Medicaid, Medicare and/or Tricare as a primary or secondary insurance (including Managed Medicare and Medicaid plans).

  • Aetna
  • AmeriHealth New Jersey
  • Anthem of California
  • Anthem BlueCross BlueShield of New York
  • Anthem BlueCross BlueShield of Ohio
  • Anthem BlueCross of Nevada
  • BlueCross BlueShield of Illinois
  • BlueCross BlueShield of Montana
  • BlueCross BlueShield of Texas
  • BlueCross BlueShield of Massachusetts
  • BlueShield of California
  • CareFirst
  • Cigna
  • CoxHealth
  • First Health Network
  • Harvard Pilgrim Health Care
  • HealthPartners
  • Health Partners Plans
  • Highmark
  • Hometown Health
  • Horizon
  • Independence Blue Cross
  • Medical Mutual of Ohio
  • Moda Health
  • MVP Health Care
  • Premera Blue Cross of Washington
  • Providence Health Plan
  • Providence Medical Associates
  • Regence (for Idaho, Oregon & Utah)
  • Partners (Saint John’s Physician Partners)
  • BlueCross BlueShield of South Carolina
  • Tufts Health Plan
  • United Healthcare
  • United Medical Resources (UMR)

*Kaiser-provider referral required; in-network with KP Washington and KP Northwest only

The cost of the genetic counseling session will be up to $250*, depending on if you pay out-of-pocket or choose to bill insurance. We are an in-network provider with most commercial health insurance plans.

Please note: the cost of genetic counseling does not include the cost of any genetic testing that may be recommended. You may receive a separate bill from the lab for genetic testing.Coverage and pricing may vary.

*Pricing subject to change

Genetic testing involves looking at blood, saliva or other tissues to find changes in an individual's genes. These genetic changes may cause an increased chance of certain medical conditions.

Genetic testing is typically done at a specialized laboratory.

Genome Medical does not perform genetic testing. As a medical practice, Genome Medical’s providers can order genetic testing, when medically appropriate, for U.S.- based patients.

Genetic testing is useful in many areas of medicine and may change the medical care you or your family members receive. For example, genetic testing may help to diagnose a medical condition. Genetic test results may help you and your care providers make more informed decisions on how to prevent or treat a medical condition.

There are thousands of genetic tests available today. A genetic counselor can help you to understand what testing may be most appropriate for you. Genetic counselors can also help to explain what genetic test results may mean for you and your family.

In most cases, genetic testing can be performed on a blood or saliva sample.

If testing is done on a saliva sample, a collection kit can be sent to you in the mail and you can collect the sample from the convenience of your home. If a blood sample is needed, you may be directed to a location near you that can perform blood draws to have a sample collected. In either case, the sample then is mailed to the lab for the testing to be completed.

The wait time to receive test results depends on the test that is ordered. In many cases, test results will be available in 2-4 weeks.

After your appointment, your genetic counselor will create an easy-to-understand summary of your discussion. Your visit summary may include medical recommendations based on your personal/family history and any genetic test results. Your test results can be shared with your healthcare team.

Genome Medical is a virtual medical practice. All of the platforms we use are HIPAA compliant. Your personal medical information will not be shared with any third party without your direct consent.

Genome Medical is a medical practice specializing in telehealth genetic services. We deliver expert guidance, accelerate diagnoses and improve outcomes for individuals and families with rare conditions. We partner with health systems, life sciences organizations and genetic testing labs and have delivered more than 250,000 genetic counseling sessions across a wide range of clinical specialties.

The FSHD Society is the largest network of patients, families, clinicians, and researchers focused on facioscapulohumeral muscular dystrophy. FSHD Society may provide resources and connections. Find more information at FSHDSociety.org/newly-diagnosed.