FAQ

Akkure Genomics Ireland a leading Irish medtech launched the groundbreaking Project Akkure aimed at developing new medical technologies and potential cures for life threatening illnesses.
Akkure, which creates Medical Digital Twins – a unique virtual copy of a patient’s entire genetic makeup – plans to do this by generating sets of patient-owned genetic data of cohorts of people with neurological diseases conditions such as Multiple sclerosis (MS), Motor neurone disease (MND) along with Cancer. All of which as close to our hearts at Akkure.
By grouping the data together on Akkure’s system, researchers will be able to mine this powerful data for key insights and help clinicians develop new technologies and potential cures through precision medicine.

Akkure Genomics takes seriously the trust you place in us, using a range of reasonable physical, technical and administrative measures to safeguard your personal information. Those measures are in accordance with current technological and industry standards and are meant to prevent unauthorized access or disclosure of information, as well as maintain data accuracy, and to ensure the appropriate use of information. The only way your data would be shared with third parties would be by your choice. Akkure Genomics cannot secure personal data that you release on your own or that you request us to release. We also ask you to be responsible for safeguarding your password and other authentication information you use to access our services.

As part of this study, Akkure Genomics may share only de-identified, individual-level data with qualified research collaborators or upload these data to a controlled-access database. This means you cannot be easily identified by others whom we may collaborate with in the future (researchers, scientists, etc.).

We built our systems with the privacy and security of our research participants at the center and we have a number of safeguards in place to ensure confidentiality. Data in the research computing environment are coded with a unique research ID.

There are always unknown threats in information security. Therefore, we cannot fully guarantee the security of your data. However, we constantly update our security systems and protocols to deal with new threats as they become known. We protect against known factors by applying industry practices in our information security procedures.

Akkure Genomics Research is performed in a secure computing environment with access restricted to research scientists and system administrators. Akkure Genomics servers are protected by technical, physical, and administrative procedures. Our servers are monitored for unauthorized activity. Your Genetic Information and sensitive account information, such as passwords, are encrypted, as are data transfers between our servers and your computer(s).

Joining this study will not affect your diagnosis or treatment options today. Participation allows you to contribute to an effort to potentially develop more effective treatments that can improve the lives of those living with the disease. We are all in this together to improve outcomes for everyone who suffers with diseases like yours.
When can I expect to hear back from Akkure about the Find Akkure Project

As soon as we have our first patient cohort registered we will begin reaching out. So we expect to have that cohort assembled the the end of 2022.
Security and Confidentiality

What do I need to do to participate in the Find Akkure Project?

Register your interest in Project FIND Akkure
Once we reach a critical number we will reach out to our first eligible patient cohort
You will receive an invite to get your DNA sample (from your saliva) for genetic analysis, and to create your account with Akkure.com
Update your profile which will include details about your diagnosis, treatment, symptoms, medications, and family history. Connect your wearable device (if you have one) to our Akkure application.

Will this project help me find better treatments for my condition?
Joining this study will not affect your diagnosis or treatment options today. Participation allows you to contribute to an effort to potentially develop more effective treatments that can improve the lives of those living with the disease. We are all in this together to improve outcomes for everyone who suffers with diseases like yours.

We are looking for our first 1000 people to register their interest but in reality it is unlimited.
Am I eligible to participate in the Find Akkure Project?
You can participate in this study if:

You are over 18 years old and live in Ireland.
You have been diagnosed with one of the diseases we are studying.
You are willing to provide a saliva sample for DNA testing.
You are willing to complete and add your medical data and or wearable date.
If you have been diagnosed with one of the diseases listed in our call to action, you may be eligible to participate in this study.