Rare Central

Rare Central is a registry platform developed by Pulse Infoframe Inc. for rare disease communities. It is designed to support patients, advocacy groups, researchers, academic medical centers, and pharmaceutical sponsors in building and maintaining disease registries that generate real-world evidence, demonstrate disease burden, and support drug development and clinical research.

The platform is structured around three tiers to accommodate different stages of registry development, and it is built on a collaborative model that brings together multiple stakeholders while maintaining data security and governance oversight from bodies including a Scientific Advisory Board (SAB) and Institutional Review Board (IRB).

Platform Tiers

• Rare Central Starter: Supports the development of a contact registry to identify and locate patients and capture a minimal set of patient-reported outcomes. Intended for stakeholders beginning to build a registry and working with the research community and patients to define scope and requirements.
• Rare Central Accelerated: Supports a broader set of patient-reported and disease-specific variables, and includes predefined reporting and demographic query functionality.
• Rare Central Advanced: Supports patient-reported, disease-specific, and natural history data. Natural history data can be used to better target drug development and serve as a comparator arm for clinical trials.

Core Capabilities

• Disease-specific and natural history studies
• Treatment effectiveness and quality of life measurements
• Epidemiology and burden of disease analysis
• Drug development support using real-world evidence
• Deidentified data interrogation across a family of diseases to advance treatment options within and across therapeutic classes
• Agile, evolving platform that adapts as patient advocacy needs change while maintaining clean, structured data
• Clear data governance structure approved by the SAB, IRB, and other internationally recognized regulatory bodies
• Researchers and patients retain access to their own data and can grant access to others through the governance framework

Benefits by Stakeholder Group

• Patients and Advocacy Groups: Accelerate research for new treatments and possible cures; increase disease awareness; improve time to diagnosis; generate interest and support for research and funding.
• Researchers and Medical Centers: Develop biomarkers and endpoints such as treatment effectiveness and symptomatic events; build evidence to support research and publications; improve patient care and quality of life; support the development of treatment guidelines.
• Sponsors and Industry: Recruit for clinical trials; identify molecular compounds; leverage natural history data as comparator arms for clinical trials; conduct pricing reimbursement analysis; support post-marketing activities including efficacy and adverse event monitoring.

Expert Services

• Evidence strategy and analytics
• Patient insights and engagement
• Patient-reported outcomes
• Language services
• Strategic regulatory services
• Pharmacovigilance and risk management

Rare Central Pioneer Program

• Offers patient groups registered as a legal entity the opportunity to apply for one of three Pioneer spots
• Successful applicants receive their first year on the platform at no cost
• Participants commit to serving as ambassadors within the rare disease community
• Intended to support smaller patient groups with limited resources

Rare Central is offered by Pulse Infoframe Inc. as an end-to-end registry solution. The platform is designed to evolve alongside the needs of rare disease communities and supports compliance with internationally recognized regulatory standards. It is positioned to help rare disease stakeholders demonstrate to sponsors and regulators that a given disease merits investment and further research.