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.

 Where to Start

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

 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

 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

 Be Patient Centric

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

 Own Your Data

  • You control access to your data
  • Encrypt everything
  • HIPAA compliance
  • Validate data accuracy

 The Beneufit Approach

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


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

 Cloud-Based Technology

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


 100% Digital Solution

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

 Artificial Intelligence (AI)

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

 Ongoing Digital Research Projects

World-class organizations trust us to manage digital clinical trials and research projects.

See how Beneufit can help you meet your research goals.

Contact Information
Beneufit, Inc.
PO Box 401
Kentfield, CA 94901
Phone: (415) 741-1660
Email: info@beneufit.com

FOXG1 Research Foundation Patient Registry

FOXG1 Research Foundation Patient Registry