Rare Disease Patient Registries

Patient-centric registries lead to cures

“A leader is a dealer in hope.”

- Napoléon Bonaparte


Patient Registries - Lead to a Cure

The drug discovery process starts with an in-depth understanding of disease mechanisms and the needs, values and preferences of the patient.

In the rare disease world, connecting a community of patients and caregivers is a critical component to ensuring treatment options are meaningful to patients, payers, providers and drug development partners.

The modern patient registry provides the mechanism necessary for incorporating the voice of the patient in patient-focused drug development.

format_quote  Testimonials

Where to Start

A few foundational principals of a modern patient-centric patient registry.

rocket_launch  Enable your Mission:

  • Connect your global rare disease community
  • Ensure the needs of patients and caregivers are expressed
  • Generate your future clinical trials population
  • Facilitate the sharing of de-identified data for research

sentiment_satisfied  Make it Easy

  • Works the same on browsers and mobile devices
  • Takes a few minutes to complete
  • Supports multiple languages
  • Role-based system manages features and content

emoji_events  Be Patient Centric

  • Reward effort
  • Educate and engage your community by sharing registry insight
  • Provide tracking tools for longitudinal data
  • Provide support

dns  Own Your Data

  • Control access to your data
  • Monetize your data
  • Encrypt everything
  • HIPAA & GDPR compliance

 The Beneufit Approach

Be creative, don’t reinvent the wheel, use the best technology on Earth.

dashboard_customize  Value-Driven

We leverage our research platform so that you only pay for customization.

cloud  Cloud-Based Technology

Cost-effective, secure and reliable. There is no limit to what can be accomplished.


memory  100% Digital Solution

A 21st century approach to patient-centric medical research.

psychology  Artificial Intelligence (AI)

We’re working with the FDA to develop clinical outcome assessments for clinical trials.

Patient Regitry Pricing

From off-the-shelf to fully customized, you get what you want without compromise.


Number of Patients : Up to 250
Sections : Demographic, Genetics
Surveys : Up to 5 Validated
Setup Fee : $5,000
Platform Fee : $100/month


Starter Package Specifications
Plus : Longitudinal Data
Plus : Auto Engagement (Email & SMS)
Auto Engagement Fee : $100/month
Longitudinal Data Fee : $100/month


Number of Patients : Unlimited
Sections : Any Additional
Surveys : Any Additional
Setup Fee : Project Dependent
Platform Fee : Project Dependent