Beyond the Centers of Excellence: Maximizing ROI and Finding the Missing Rare Disease Patient Cohort

The pursuit of patients with rare diseases is a critical but notoriously challenging endeavor for the biopharma industry. For many conditions—from Neuromyelitis optica spectrum disorder (NMOSD) and Paroxysmal Nocturnal Hemoglobinuria (PNH) to complex genetic disorders like Hereditary Transthyretin (hATTR) Amyloidosis and Duchenne Muscular Dystrophy (DMD)—the diagnostic journey is long, the patient population is small, and the treating providers are often hidden outside of major academic centers.

The challenge is clear: how do you efficiently find these net-new patients and providers without exhausting valuable resources on patient populations you've already identified?

The Problem with Traditional Patient Finding
Traditional rare disease patient identification methods often focus heavily on established networks and large centers of excellence. While these centers are important, this approach inevitably misses a crucial segment of patients—those treated by community specialists, those whose diagnoses are only recently confirmed, or those whose data exists in sources not typically leveraged.

Chasing these "missing patients" through traditional means is costly and resource-intensive, with a high risk of low return. It often involves engaging with providers who have already been contacted or who are already treating patients known to your brand.

Introducing the Rare Disease Patient Finder: Precision-Driven Actionability
Prognos Health’s Rare Disease Patient Finder solution is built to cut through this inefficiency and drive immediate, measurable ROI. Our service is strategically designed to locate and surface these overlooked, high-value patient populations in therapeutic areas we specialize in, including Myasthenia Gravis (MG), Primary Biliary Cholangitis (PBC), Lupus Nephritis, and Spinal Muscular Atrophy.

This is not a blanket approach; it is a surgical tool focused entirely on net-new discovery.

Value-Based, Results-Driven Pricing
The core of our service is cost-effectiveness. We shift the financial risk by adopting a results-based model: you only pay for each newly identified patient who meets your specific clinical criteria.

This ensures your budget is tied directly to verified, actionable leads, not just search volume. For complete financial predictability, we can cap the total number of patients, aligning the program precisely with your budget and procurement cycles. Furthermore, the program is built for continuity—it runs until the patient cap is met, ensuring your search isn't artificially halted by the calendar year-end.

Actionability and Precision: The Pillars of ROI
The true value of the Patient Finder lies in the quality and actionability of the data delivered:

• Focus on the Missing Cohort: We specialize in identifying de-identified patients outside of the known patient sets you may already be tracking, such as those predominantly found in large academic centers.
• 100% Actionable Data: This focus allows us to deliver information about net-new treating providers for patients you haven't yet identified. Every patient found is a genuinely new lead, making the data 100% actionable and immediately relevant to your commercial and medical teams.
• Deep Clinical Precision: Patient profiles are based on robust genomic and clinical data, including criteria like gene, zygosity, and inheritance patterns. This level of detail ensures the patients we find are an exact clinical match for your therapeutic profile, supporting complex areas like Hypophosphatasia (HPP) and Primary Hyperoxaluria Type 1 (PH1).

Proof of Concept: Driving Real-World Results

Our ability to identify and activate these missing patients has a proven impact on commercial strategy. In one example, using our similar Alerts data, a client experienced a 700% increase in patient identification for a targeted therapy by focusing on providers with new-to-brand patient activity. This demonstrates the power of shifting focus to net-new information and providers.

Learn more about this success here: Prognos Health Alerts Case Study

The Rare Disease Patient Finder is a smarter, more efficient way to allocate resources, ensuring that every dollar spent contributes directly to successfully finding the patients who need life-changing therapies for conditions like Hereditary Angioedema (HAE), Fabry Disease, or Transthyretin Amyloid Cardiomyopathy (ATTR-CM).

It's time to move beyond the constraints of traditional patient finding. 

Interested in having a conversation about our Rare Disease Patient Finder? Talk to our clinical team today.