Together in Discovery, Join the Journey

Fueling Hope Through Research Readiness

‘Research Readiness’ refers to the state of being adequately prepared to engage in and support research activities effectively. It involves having the necessary infrastructure, resources, knowledge, and strategic planning to facilitate meaningful and impactful research.

Key Components of Research Readiness

1. Patient & Community Engagement – Education in research readiness empowers families with clear, accessible information on their disease, clinical trials, genetic therapies, advocacy, and research participation. It helps them make informed medical decisions, advocate for better care, and connect with relevant studies. By bridging knowledge gaps, fostering confidence, and encouraging community engagement, families play a vital role in shaping research priorities, contributing data, and driving progress toward better treatments.

2. Strategic Planning – Setting clear objectives, timelines, and methodologies to guide research efforts.

3. Collaboration & Partnerships – Establishing networks with researchers, clinicians, industry partners, and advocacy groups.

4. Education & Awareness – Providing training and information to stakeholders on research processes, goals, and expectations.

5. Regulatory & Ethical Compliance – Understanding and adhering to legal, ethical, and institutional research requirements.

6. Data Collection & Management – Ensuring high-quality, standardized, and accessible data for research purposes.

7. Funding & Resource Allocation – Securing financial and material resources to support ongoing and future research.