Your BAG3 report can connect you to a clinical trial or other research
Every shared genetic report brings us one step closer to a dilated cardiomyopathy (DCM) breakthrough.
If you are aged 18-70 with a diagnosis of DCM and have previously undergone genetic testing, upload your report and contribute to DCM research without leaving your home.
Do you have dilated cardiomyopathy?
We are looking for people with a diagnosis of dilated cardiomyopathy to help researchers understand your condition. And, if eligible, you may be referred to a new clinical trial.
ELIGIBILITY
Am I eligible?
Sano Genetics has partnered with Alexion to find dilated cardiomyopathy patients with changes in a gene called BAG3 for an upcoming clinical trial. By answering a short online questionnaire and uploading your existing genetic test, we can identify if you are eligible for this clinical trial.
Changes in the BAG3 gene are strongly linked to DCM, with about 80% of people over 40 who have changes in this gene developing the disease. Although BAG3-associated DCM is our main focus at this time, in the future we may explore other DCM-related genes.
If you have a DCM diagnosis and want to receive condition-specific material to better understand your DCM and contribute to future studies, please sign-up.
During the process, you will be given access to an optional, virtual one-to-one genetic counseling session to discuss your existing report with a genetic counsellor.
PROCESS
How much of my time will this take?
The total time commitment for this programme is roughly twenty minutes and is broken down as follows:
Enrolment and initial questionnaire: 15 minutes
Uploading your existing genetic report: 5 minutes
Once uploaded, a member of the Sano Genetics team will review your report. If there are any issues, we will inform you by email.
You will also have the opportunity to schedule a one-to-one, virtual meeting with a genetic counselor to discuss your results in more detail.
BENEFITS
How will this benefit me?
When you upload your test results to our secure, fully encrypted platform, you may benefit from:
Finding out if you’re eligible to be referred to an exciting gene therapy clinical trial
A cost-free, optional meeting with a genetic counselor
DCM educational materials sent straight to your inbox
And help shape better outcomes for families affected by genetic DCM.
Your questions, answered
Who is Sano Genetics?
We help companies find patients to participate in their clinical trials. We do this by offering cost-free online tools that make the enrolment process simple for patients. We specialise in supporting research in rare, genetic conditions.You can find out more about Sano Genetics on our website.
What will happen with my data and/or sample?
Sano Genetics will collect certain information from you to enrol you into the study. This information includes your name, date of birth, sex at birth, telephone number, email address and home/shipping address and is collectively referred to as “Personal Information”. Together, your Personal Information, the answers that you provide about your medical history, and your genetic report, are called “study data.” Your study data will be stored on secure and encrypted HIPAA and UK-GDPR compliant servers owned by Sano Genetics and located in the UK.
How long does the process take?
The total time commitment for participants is roughly 20 minutes. If you choose to have a genetic counseling session, this will take 30 minutes. If you are referred to the clinical trial, this will require a further time commitment.
Are there costs involved in participating?
No. Genetic consultations will all be paid for, in full, by Sano Genetics.
