Genetic Family Vault

Todo Inclusión A. C.

Prolonged and Inefficient Diagnostic Journey: Patients with rare diseases face a prolonged and inefficient diagnostic journey that can take an average of five years. This extended period often results in many patients remaining undiagnosed. The delays in reaching a definitive diagnosis not only postpone the initiation of appropriate treatments but also exacerbate the uncertainty and suffering experienced by both patients and their families.

Our solution is the Family DNA Collection Kit combined with an advanced digital platform that leverages blockchain technology and AI to address the challenges faced by patients with rare diseases. Here’s how it works:

1. Family DNA Collection Kit: The kit collects genetic samples from family members and uses blockchain to track these samples, ensuring secure access and data ownership for the families.

Provides families with complete control over their genetic data, enabling secure sharing with healthcare providers and researchers.

2. Private Virtual Machines: Each family’s data is processed in a private virtual machine, avoiding data centralization while still enabling secure data mining and analysis.

Protects privacy and ensures data security.

3. Decentralized Data Storage: Blockchain technology is used to store genetic data in a decentralized manner, ensuring that data is encrypted and distributed across the network.

 4. AI-Driven Analysis and Insights: AI tools analyze the genetic data within the private virtual machines, providing personalized insights and recommendations.

5. Efficient Diagnostic Support: The platform facilitates quicker and more accurate diagnoses by providing direct access to genetic data and enabling easy sharing with healthcare providers and researchers.

Reduces the time and cost associated with diagnosing rare diseases.

Our solution serves a broad range of stakeholders, particularly focusing on:

1. Patients with Rare Diseases: The Family DNA Collection Kit and platform provide patients with secure access and control over their genetic data. This empowers them to make informed health decisions, facilitates quicker and more accurate diagnoses, and helps identify personalized treatment options. By involving patients directly in their healthcare process, the solution reduces the emotional and physical burdens of prolonged diagnostic journeys and ineffective treatments.

2. Healthcare Providers and Researchers: Healthcare providers and researchers benefit from streamlined access to well-organized genetic data, which facilitates more efficient and accurate clinical assessments and research studies. The decentralized, secure nature of the data ensures privacy and compliance, reducing the administrative burden on these professionals.

3. Laboratories: By not acting as data custodians but rather as data processors, laboratories are relieved from the heavy responsibility of data management. This shift allows them to focus on their core functions of testing and analysis while still contributing valuable data to research and patient care without the associated risks and liabilities.

Todo Inclusion A.C. has selected the “Pilot” stage for the Family Vault due to several key factors that demonstrate its progress and readiness for broader implementation:

 1. Initial Development and Testing:

• Completion: The core components of the Family Vault, including the Family DNA Collection Kit, blockchain-based data tracking and ownership, and the creation of private virtual machines for secure data processing, have been successfully developed.

• Validation: These components have undergone rigorous internal testing to ensure functionality, security, and compliance with regulatory standards.

2. Initial Pilot Implementations:

• Collaborations: We have initiated pilot programs with select families and healthcare providers. These pilots are designed to gather real-world feedback on the usability, effectiveness, and impact of the Family Vault solution.

• Feedback Collection: Early feedback from these pilot participants has been positive, highlighting the platform’s potential to streamline genetic data management, improve diagnostic accuracy, and empower patients with rare diseases.

3. Security and Compliance:

• Blockchain and Privacy: The pilot phase includes robust measures to ensure the security and privacy of genetic data through blockchain technology. This phase is essential for validating these security protocols in real-world settings.

4. Data Interoperability and Community Building:

• Interoperability: The pilot stage allows for refining the interoperability of the platform, ensuring seamless data sharing and collaboration between families, healthcare providers, and researchers.

5. Scalability Assessment:

• Scalability Testing: During the pilot phase, the scalability of the platform to handle larger datasets and increased user loads is being assessed, preparing for a full-scale launch.

• Performance Metrics: Collecting performance metrics during this stage helps identify areas for improvement and ensure the platform can support widespread adoption.

Our solution, the Genetic Family Vault, stands out for its innovative approach to managing genetic data. Here are the key elements that make it groundbreaking:

 1. Decentralized Data Governance: Unlike traditional centralized systems, our solution employs decentralized data governance using blockchain technology. Each family controls their own private virtual machine where their genetic data is stored and processed.

This ensures that families have full ownership and control over their data, eliminating the risks associated with central data repositories.

2. Blockchain-Based Cybersecurity: We utilize blockchain technology to secure genetic data, ensuring it is encrypted and distributed across the network.

3. Transparency and Consent Tokens: Description: Our system uses consent tokens for each new connection to the Family Vault. These tokens are generated by the families to authorize access to their data.

This ensures complete transparency and control over who can access the data, fostering trust and maintaining privacy.

4. AI Co-Pilot for Private Conversations: The platform includes an AI Co-Pilot that facilitates private conversations with families about their genetic data. This AI is designed to provide personalized insights and recommendations.

Families can learn from their data in a secure, private environment, receiving tailored information that helps them make informed health decisions.

5. Generational Health Knowledge: The Family Vault allows health data and insights to be inherited by future generations.

This enables families to maintain a continuous health record, providing valuable historical health data that can inform better health decisions and improve outcomes for future generations.

Todo Inclusion is applying to The Amgen Prize to advance our mission of improving the lives of patients with rare diseases through innovative solutions. Here’s why we believe this prize is crucial for our project:

 1. Scaling Our Impact: Winning the prize will provide us with the necessary funding and resources to scale the Genetic Family Vault project, reaching more families in need.

This will enable us to expand our pilot programs, enhance our technology, and make a greater impact on the rare disease community.

2. Enhancing Visibility and Credibility: Recognition from The Amgen Prize will enhance our visibility and credibility within the healthcare and nonprofit sectors.

3. Building a Supportive Community: The prize will help us foster a supportive community for patients with rare diseases and their caregivers.

4. Empowering Patients and Caregivers: With the prize, we can empower more families to take control of their genetic data and healthcare decisions through our secure, transparent, and user-friendly platform.

5. Supporting Research and Collaboration: The funding will enable us to enhance data interoperability, allowing for better collaboration between patients, healthcare providers, and researchers.

This will drive advancements in rare disease research and treatment, accelerating the development of new therapies and improving patient care.

Todo Inclusion led by CEO Junot Quiroz, is exceptionally well-positioned to deliver the Genetic Family Vault solution. Here’s why:

 1. Personal Connection and Advocacy: Junot Quiroz, our CEO, is not only a long-time advocate for rare disease patients but also a patient himself. His personal experience with a rare disease, Osteogenesis Imperfecta, provides deep insight into the challenges faced by patients and their families.

This unique perspective ensures that the Genetic Family Vault is designed with empathy and a genuine understanding of the patient experience.

2. Expertise in Rare Diseases: Experience: Our team has extensive experience working with rare disease patients, understanding their unique needs and challenges. This knowledge is crucial in tailoring the Genetic Family Vault to effectively address these issues.

3. Technical Proficiency: We have a skilled team proficient in advanced technologies like blockchain and artificial intelligence, which are integral to the Genetic Family Vault.

4. Strong Partnerships: Our partnership with GenoBank.io adds significant technical and domain expertise.

5. Track Record of Success: We have successfully launched pilot programs, gathering valuable real-world feedback and demonstrating the effectiveness of our solution in diverse settings.

6. Dedication to Innovation: Our team is dedicated to continuous innovation, constantly seeking ways to improve and enhance the Genetic Family Vault.

Next Year: 1,000 Families

Impact Goal: Empower 1,000 families with rare diseases to take control of their genetic data and healthcare decisions through the Genetic Family Vault platform.

 Measurement:

 • User Enrollment: Track the number of families who sign up and actively use the platform.

• User Engagement: Monitor platform usage metrics such as data uploads, AI-driven consultations, and participation in other features.

• Feedback and Satisfaction: Collect feedback from users through surveys and direct interactions to gauge satisfaction and identify areas for improvement.

Achieving the Goal:

• Partnerships: Expand partnerships with healthcare providers, rare disease advocacy groups, and nonprofits to reach and support more families.

• Awareness Campaigns: Conduct targeted awareness campaigns to educate families about the benefits of the Genetic Family Vault and encourage enrollment.

Next Five Years: 100,000 Families Globally

Impact Goal: Empower 100,000 families globally with the Genetic Family Vault platform, making a significant impact on the rare disease community worldwide.

Measurement:

• Global Reach: Track the number of families enrolled across different countries and regions.

• Platform Adoption: Measure the adoption rate and engagement levels of the platform on a global scale.

• Health Outcomes: Assess improvements in health outcomes, such as reduced diagnostic times and enhanced treatment personalization, through longitudinal studies and data analysis.

• Community Growth: Monitor the growth of the online community and support networks facilitated by the platform.

Achieving the Goal:

• International Partnerships: Forge partnerships with international healthcare organizations, rare disease foundations, and governmental health agencies to expand our reach.

• Localized Strategies: Develop localized strategies and tailor the platform to meet the specific needs and regulations of different regions.

• Scalability Enhancements: Continuously improve the scalability of the platform to handle large volumes of data and users, ensuring a seamless experience for all families.

• Innovation and Improvement: Invest in ongoing research and development to enhance the platform’s features, particularly in AI-driven insights, data security, and user experience.

• Advocacy and Policy Influence: Engage in advocacy efforts to influence health policy and promote the importance of data ownership and interoperability in rare disease management.

How Our Solution Works:

1. Family DNA Collection Kit: Families use our kit to collect genetic samples, which are securely tracked and stored using blockchain technology.

This ensures that the genetic data is protected and only accessible to the family.

2. Private Virtual Machines: Each family’s data is processed in a private virtual machine, ensuring data privacy and security.

Families own and control their data, deciding who can access it and for what purpose.

3. AI-Driven Insights: Our platform uses AI to analyze genetic data and provide personalized health insights.

This helps families understand their genetic information.

Why Our Solution Will Have an Impact:

1. Empowering Families: By giving families control over their genetic data, they can make informed health decisions and advocate for their own care.

This reduces the time and stress associated with long diagnostic journeys.

2. Improving Diagnosis and Treatment: Access to personalized health insights from AI helps identify potential treatment options and clinical trials.

3. Reducing Costs and Burdens: Secure, decentralized data storage reduces the need for repeated tests and frequent travel.

Families save on out-of-pocket expenses and avoid bureaucratic hurdles.

4. Enhancing Research and Collaboration: Secure data sharing enables researchers and healthcare providers to collaborate more effectively.

This accelerates medical research and the development of new treatments for rare diseases.

Evidence-Based Impact: 

According to a study by John Hopkins, involving patients in their diagnostic process and incorporating computer algorithms can improve health outcomes by up to 50% (Johns Hopkins Medicine, 2016). Our solution integrates AI-driven insights and actively involves patients in their healthcare decisions, aligning with these findings to significantly enhance diagnostic accuracy and treatment efficacy.

Our team consists of five members:

-Full-time staff: 3

- Part-time staff: 1 

- Contractor: 1

We have been working on the Genetic Family Vault for the past three years.

Diversity and Inclusion:

At Todo Inclusion, we believe that a diverse and inclusive team is essential for innovation and success, especially in addressing the complex challenges faced by patients with rare diseases. Here’s how we ensure diversity, minimize barriers, and create an inclusive environment:

Diverse Hiring Practices: We actively seek candidates from diverse backgrounds, including different cultures, genders, ages, and abilities. Our hiring practices are designed to eliminate biases and focus on the unique skills and perspectives each candidate brings.

Inclusive Work Culture: We foster an inclusive culture where every team member feels valued and respected. Regular training on diversity and inclusion helps maintain awareness and sensitivity within the team.

Flexible Work Arrangements: We offer flexible work arrangements to accommodate the diverse needs of our team members, including remote work options, flexible hours, and support for those with caregiving responsibilities.

Our business model for the Genetic Family Vault combines subscription-based revenue, data monetization, and strategic partnerships to create a sustainable and impactful solution for managing genetic data for families affected by rare diseases. Here are the key components of our business model:

1. Subscription-Based Revenue (donations):

• Sponsored Blockchain Secured DNA (Exome) Collection Kit: $399 USD per family member.
• Sponsored Annual Subscription: Families subscribe to the Genetic Family Vault platform for an annual fee of $199 USD. This subscription provides access to secure data storage, AI-driven insights, and community support features.

2. Data Monetization:

• Consent-Based Data Sharing: Families have the option to share their anonymized genetic data with researchers and pharmaceutical companies through consent tokens. These tokens ensure that data sharing is secure, transparent, and aligned with family interests, $10 USD per credit.

3. Strategic Partnerships (large sponsors):

Enterprise Solution: We partner with healthcare providers, research institutions, and pharmaceutical companies to facilitate the use of the Genetic Family Vault in clinical studies and trials. These partnerships help to expand the platform's reach and impact.  

Plan for Financial Sustainability:

1. Annual Subscription Fees (donations): Families pay $199 USD annually for access to secure data storage, AI-driven insights, and community support features. Provides a steady and predictable income.

2. DNA Kit: $399 USD per family member, including exome sequencing. Generates significant initial revenue.

3. Ethical Data Monetization: Families can share anonymized genetic data with researchers for compensation. Creates another revenue stream while compensating families.

4. Strategic Partnerships: Collaborations with healthcare providers, research institutions, and pharmaceutical companies.

5. Grants and Sponsorships: Actively pursuing grants and corporate sponsorships.