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About the Find Akkure for Alzheimer's Project

Announcing the launch of Find Akkure!

We are now accepting members to create communities of Medical Digital Twins for those individuals at risk of developing Alzheimer’s Disease.

Akkure Genomics will help subsidise the digitalisation of the DNA of eligible candidates to contribute to ground-breaking genetic research into that condition.

Find out more at Akkure.com and follow on social using #FINDAKKURE

Find Akkure for Alzheimer's Info Sheet

    We care about your personal data.
    It is processed in line with our Data Protection Notice

    What is a Medical Digital Twin?

    AKKURE Genomics is asking patient cohorts to create their own Medical Digital Twins, to create a library of physiological, genomic and clinical data combined with an innovative system for data accessibility and use. Through permissioned access to their Medical Digital Twins, in partnerships with Research Organizations and Pharmaceutical companies, we can advance the rapid and efficient development of novel therapeutics and new medical technologies.

    AKKURE is a MedTech company that creates Medical Digital Twins using state of the art technology founded by Prof. Oran Rigby and Prof. Amy Hollingworth. Medical Digital Twins represent virtual copies of a person’s entire genetic makeup. These Twins are a powerful asset, owned by the patient. Digital Twins have the potential to revolutionize the way new therapeutics are developed, with patients lending access to their precision medical data.

    AKKURE is a patient-centric organisation and we’re building the digital infrastructure to empower patients to create, own, control and deploy their data in the form of medical digital twins, Our technology ensures no third party can use patient data without patient consent. We need to build a powerful alliance of Research Organisations, Doctors, Pharmaceutical Biotech companies and most importantly Patients.

    Our Goal

    By working together, researchers will be able to mine this powerful genetic data for key insights and help clinicians develop new technologies and potential cures through precision medicine.

    FAQs and Resources

    Don’t see your question here? Then get in touch through our Contact Us form.

    Participation

    What is the Find Akkure Project?

    Akkure Genomics, a leading Irish medtech company, launched the groundbreaking “Find Akkure” Project, aimed at facilitating medical research and developing novel therapies for a variety of serious conditions. 

    Akkure, which creates Medical Digital Twins - a unique virtual copy of a patient’s entire genetic makeup - plans to do this by generating cohorts of patient-owned genetic data from people with neurological diseases, including conditions such as Multiple sclerosis (MS) & Motor neurone disease (MND), and Cancer. 

    Via secure storage of cohort data on Akkure’s platform, researchers will be able to mine this powerful data for key insights and hopefully utilize the data to facilitate novel technologies, therapies and treatments for various diseases.

    How many people can register for the Find Akkure Project?

    Currently we are looking for our first 1000 people to register their interest. After this time, the project will recruit participants on an ongoing basis.

    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 the Republic of 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 data.

    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).

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

    1. Register your interest in the Find Akkure Project via our website
    2. Once we reach our recruitment target we will reach out to our first eligible patient cohort
    3. After you receive an invite to create your account with Akkure.com, complete your genetic test kit, take your DNA saliva sample and send it for genetic analysis.
    4. Update your profile with details about your diagnosis, treatment plan, current symptoms, medications, and family history. 
    5. Connect your wearable device (if you have one) to the Akkure application.

    Will this project help me find better treatments for my condition?

    Joining this study will not affect your diagnosis or treatment options at present. 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. 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

    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. We expect to have that cohort assembled by the beginning of 2023.

    Security and Confidentiality

    How will my details be used by the Find Akkure Project?

    As part of this study, Akkure Genomics may share only de-identified, individual-level data with qualified research collaborators or upload this 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.).

    Our systems have been built to center the privacy and security of our research participants, and we have a number of safeguards in place to ensure confidentiality. Data in the research computing environment is 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’ and partner’s activities are 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).

    How does Akkure protect the confidentiality of my data?

    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. These 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 with your consent. 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.

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