Can real-world data power faster breakthroughs in rare diseases?
Dr. Kamal-Uddin discusses how Real-World Data has the power to transform how we understand and treat rare diseases.
Real-World Data (RWD) captures the complexity of patient care โ comorbidities, disease pathways, and treatment outcomes โ outside controlled clinical trials. Alongside the gold standard of clinical research, RWD is increasingly recognized by regulatory authorities as a critical complement for assessing drug safety, efficacy, and adoption into clinical practice.
Biobanks represent a unique and underutilized source of RWD and Real-World Evidence (RWE), highly valuable for pharmaceutical research. Yet collaboration between biobanks and industry remains challenging:
Biobanks often lack the infrastructure and resources to engage with pharma partners securely and efficiently.
They may face difficulties meeting tight timelines or articulating the depth of their data collections.
These barriers can obscure the value of their repositories and slow down partnerships.
To bridge this gap, BC Platforms invites biobanks to join its Global Data Partner Network, a federated ecosystem that connects data custodians with industry researchers under a secure, compliant architecture.
By joining the network, biobanks:
Retain full control of their data and access policies.
Participate in approved, funded research that aligns with their mission and governance.
Generate new value and visibility for their data assets.
BC Platforms serves as a trusted facilitator, ensuring privacy, compliance, and technical interoperability between data partners and industry sponsors through its software solutions and project management expertise.
Three European biobanks โ in Germany, Finland, and Estonia โ collaborated with a leading global biopharmaceutical company to explore data availability in solid tumors and GI autoimmunity.
As new members of the Global Data Partner Network, the biobanks shared insights into the structure and strength of their collections. Before launching a full-scale RWD study, the pharma company commissioned a Scope Refinement Study to verify the depth and breadth of available data.
Using a standardized workbook template provided by BC Platforms, each biobank described its data in aggregated form. The objective was to assess:
Data granularity: attributes, depth, and availability
Overall coverage: cohort size, classification, and incidence
Longitudinal coverage: data continuity and time span
The project respected each biobankโs local approval processes, with compensation provided for participation. Within one month, all three partners completed their analyses โ collectively describing over 1,000 clinically relevant, consented subjects.
The pharma partner gained a detailed understanding of available cohorts and statistical power for future research.
Biobanks gained practical insight into industry RWD requirements and strengthened their readiness for collaboration.
The Scope Refinement approach demonstrated an efficient, low-risk pathway for validating data assets and initiating funded partnerships.
Let’s discuss your specific Real-World Data needs.