HCMA Nest Portal FAQ - Hypertrophic Cardiomyopathy Association

Who is Nest Genomics?

Nest Genomics is a healthcare software company based in New York. Our team is committed to increasing access to genetic information and empowering patients and providers to use genetic information to drive better care. We collaborate with health systems, providers, and patient advocacy groups to launch and implement large-scale programs.

What is the Nest companion?

The Nest companion is your home for genetic information. Our goal is to support you with education and tools to improve your health, be proactive about your care, and stay on top of the latest medical guidelines for your condition.

What are HCMA and Nest collaborating on?

HCMA and Nest are partnering to make HCMA’s current and future services more easily accessible to you. All HCMA members will receive access to the Nest companion. We are also working together to streamline the process of keeping your health information up-to-date so HCMA can help make sure you get the care you need.

Why should I use Nest?

Nest is based on the philosophy that knowledge is power. Nest makes it easy for you to:

Identify the specialty care you need based on your genetic information
Learn what to expect from screenings and procedures that may be recommended to manage your disease risks
Update your health history information
Access supporting services and resources

Soon we plan to offer you additional services through the Nest platform like sharing information with healthcare providers and family members, consenting to participate in clinical trials and research, and keeping up with latest management guidelines for inherited diseases.

What data is being collected?

We are asking for an update on the latest tests you’ve completed as part of your HCM care, along with the dates you had the tests. Any test results will be shared directly with HCMA.

Where is my data stored?

We store your data securely on servers hosted by Amazon Web Services (AWS) in data centers located in the US. AWS is one of the leading cloud computing providers and has strict security protocols in place to protect your data.

Nest Genomics believes that patients own and control their own data and will not commercialize or share your data with anyone outside of your provider.

How is my data protected?

We follow industry best practices to protect your data. This includes encrypting your data both in transit (when it is being sent over the internet) and at rest (when it is stored on our servers). We also use firewalls, intrusion detection systems, and other security measures to prevent unauthorized access to your data. In addition, we regularly monitor and test our systems to ensure they are secure and up-to-date with the latest security patches. We take the privacy and security of your data very seriously and are committed to keeping it safe.

What will my data be used for?

The information you provide will be used to update the HCMA’s patient registry. This registry allows HCMA to help you stay on track with recommended care, update you on changes to HCM management guidelines, offer you to participate in clinical studies, support you with personalized resources and more.