Have questions? Well, we may have the answers you’re looking for.
What is InCSD Rare?
InCSD Rare is a nonprofit initiative that supports rare disease communities by building regulatory-grade natural history databases, developing fit-for-purpose clinical outcome assessments (COAs), and advancing innovative clinical trial designs. We work with patient organizations, families, and scientists to make data meaningful and actionable.
Who can work with InCSD Rare?
We welcome collaboration with patient advocacy groups, rare disease nonprofits, clinicians, caregivers, and researchers who want to improve data quality, disease understanding, and trial readiness.
What types of registries or databases does InCSD Rare help build?
We support the design and development of patient registries and natural history studies that meet regulatory-grade standards, enabling their use in clinical trials, drug development, and health authority submissions.
Does InCSD Rare provide consulting for clinical trial design?
Yes. We offer strategic support for innovative trial designs including decentralized, adaptive, and patient-centered approaches aimed at accelerating therapeutic development.
How is InCSD Rare different from other registry platforms?
We focus not only on data collection but also on scientific and regulatory relevance. Our tools and guidance are tailored to ensure data is fit-for-purpose, aligned with research goals, and useful to both communities and regulators.
Is InCSD Rare only for rare diseases?
Yes. Our focus is specifically on supporting organizations working in the rare and ultra-rare disease space.
Can caregivers or families get involved?
Absolutely. We believe families and caregivers are essential partners in shaping meaningful research. We offer opportunities to get involved through volunteering, advisory roles, and participation in community-led initiatives.
How can I get started?
Reach out to us at info@incsdrare.com