At Pairnomix, we’re eager to help patients and families, like you, act on the information you’ve received from genetic sequencing, and take steps that could have a positive impact on your life. Along the way, we make every effort to keep you fully informed of our progress and at ease with our entire process.
That means we use clear, everyday language, stay in close contact, and strive to provide you with an experience that isn’t overwhelming.
We’re excited to get to know you, and find out how we can help. In the meantime, please visit our Fact Sheets page, which provides additional information about the genetics field.
- 1. Patient FAQ
- 1. How can I find out if I am eligible for Pairnomix services?
To be eligible for Pairnomix services, we request that you meet the following two criteria:
- Your condition has a genetic cause as determined by genetic testing, and that data is available to you in original form.
- Your condition was diagnosed by a specialist and is not well managed by medication.
Please note that our initial work is in the epilepsy and seizure disorder settings, but we will also offer our services to patients with other conditions that meet the above criteria.
If you meet these criteria, you can provide us with a copy of your sequencing report. Our scientific team will then review your mutation to determine if there is a path forward for genetic research. We will only perform our genetic research services if we believe they will contribute information of value. If we believe there is a path forward, we will then ask you to involve your physician.
Note: If you have not undergone genetic testing or would like to learn more about it, please click here for an informational guide. If you have had genetic testing and would like assistance interpreting the results, please click here for instructions on how to connect with a professional who can help.
- 2. Could I have other conditions besides epilepsy or a seizure disorder that would make me eligible for Pairnomix services?
Yes. Our initial work is in the epilepsy and seizure disorder settings, but we will also offer our services to patients with other neurological or neuromuscular conditions that meet the above criteria. Our scientific advisory board has experience with a variety of disease states.
- 3. Do I need to have my doctor order Pairnomix services on my behalf?
You can reach out to Pairnomix and we would be happy to speak with you about the services we provide. If you decide you would like to move forward with our personalized genetic research offering, your physician will need to order the service. Your physician is in the best position to help you make healthcare choices and determine if Pairnomix personalized genetic research services could contribute learnings of value. Companies that have reached out to patients directly in the provision of health-related genetic services have been reprimanded by the FDA for irresponsible business practice.
As such, we require that your physician order our research services by filling out and signing the one-page Pairnomix Order Form. This document can be provided to physicians through an email request at firstname.lastname@example.org.
At your request, our Patient Advocates are available to speak with you and inform you about Pairnomix. They’re also there to help you decide if our services are appropriate for you, taking into consideration our eligibility requirements and our commitment to only perform services when our scientists believe they will provide information of value about your mutation.
- 4. Besides the Pairnomix Order Form, what additional information will my physician or I need to share with Pairnomix during the provision of services?
Your physician will need to provide Pairnomix with your genetic sequencing report and a copy of your medical record for research purposes.
You will be voluntarily asked to provide Pairnomix with additional information about your condition, including your family medical history, quality of life, and costs you have incurred that are related to your epilepsy treatment and management.
We request this information because it may help to inform our research and help us make a case for insurance reimbursement. We want to do our best to further research and provide information that could help patients.
- 5. What does it mean when you say you will 'model' my mutation?
Modeling a mutation refers to the process by which a replica of your mutation is custom-built in a laboratory and then analyzed to understand how your mutation contributes to your condition.
Everything that we need to do this can be found in your genetic sequencing report ― at this time, we do not need you to provide a tissue or blood sample.
For more information about genetic modeling, please click here.
- 6. How long will the process take?
Pairnomix targets six months or longer to complete its services. We will give our best estimate on a case-by-case basis. It takes time to build genetic models with care and accuracy as well as to perform drug screens.
- 7. How will I receive my personalized assessment?
Pairnomix releases its informational reports to your physician to share with you.
We do this because qualified physicians are in the best position to interpret the information within the report and use it to inform clinical care.
- 8. What information is included in the informational report?
We will provide your physician with two informational reports. The first, provided after mutation characterization, describes the normal physiological processes that were found to be disrupted by your mutation. The second, provided after drug screening, gives information on which drugs improve the dysfunction associated with your mutation within the laboratory model we created.
- 9. What's the likelihood this process will help me?
As a company that performs research on mutations for which there is little to no existing knowledge, we won’t know upfront what we will uncover throughout the course of our studies.
There are a number of proof-of-concept studies in which modeling mutations implicated in epilepsy and screening drugs against them have led to improvements in clinical management, but we cannot guarantee that this will happen in every case. However, we believe that in most cases we will have some degree of learning, not previously available, that we can relay back to your physician about your mutation.
It is then up to your physician to interpret the information we provide and determine the best way to manage your condition.
- 10. What is the Alumni Engagement Program?
Pairnomix Alumni Engagement Program is a program in which you will automatically be enrolled after your informational reports are released and you become an ‘alumnus’ of Pairnomix. As part of this program, we will periodically review the scientific literature as well as the data we generate internally and will provide you with research updates or new opportunities relating to your mutation.
- 11. I'm active in a patient foundation. Can my patient foundation group work with Pairnomix?
Your patient foundation may be able to work with Pairnomix in a variety of ways, including, for example, funding genetic research on a gene or mutation of interest. Please contact us to learn more.
Note: If you are not active in a patient foundation but are interested in joining or starting your own, please click here for information.