We Do Data Right.

Partnering for the Journey Ahead With Rare Central™

The most challenging journeys should not be traveled alone.

Rare Central Starter

Are you developing a contact registry to identify and locate patients and to support a minimal set of patient reported outcomes? With Rare Central Starter, we enable stakeholders to start building the platform and work with the research community and patients to further define and evolve the registry scope and requirements.

Rare Central Accelerated

Are you supporting a broader set of patient reported and disease-specific variables? Then Rare Central Accelerated is your solution. It also includes predefined reporting and demographic query functionality.

Rare Central Advanced

Are you ready to build a fully functional registry? Rare Central Advanced supports patient reported, disease-specific data and natural history data. You can capture natural history data to help better target drug development and use the data as a comparator for clinical trials.


The Rare Journey Cannot Be Completed Alone

Collaboration forms the foundation of Rare Central. It allows patients, advocacy groups, pharmaceutical companies, and academic medical centers to work together while enabling scientists and researchers to interrogate deidentified data across a family of diseases to advance treatment options within and/or across therapeutic classes.

When you work with us, know that you have a team of experts working shoulder-to-shoulder with you. Our experts specialize in evidence strategy and analytics, patient insights and engagement, patient reported outcomes, language services, strategic regulatory services, pharmacovigilance, and risk management.

We partner with you to create a registry specific to your rare disease.

We’d love to accompany you on your journey.

Our unique platform enables research for rare disease communities and helps demonstrate to sponsors and regulators that your rare disease merits investment.
With Pulse Infoframe, your data is safe and secure. Researchers and patients will always have access to their own data and provide others with access through a clear governance structure that is approved by the Scientific Advisory Board (SAB), Institutional Review Board (IRB), and other internationally recognized regulatory bodies.

Rare Central Prioritizes Your Needs, Not Ours

Medicine and science are not static, and neither is an agile, well-designed evidence platform. As your patient advocacy needs change, Rare Central will evolve with you while keeping your data clean and structured. We offer end-to-end solutions that will support you on your journey down the long, winding road that is a hallmark of rare disease research.

Real-World Use of Evidence

Real-world data combined into one voice provides many opportunities for all rare disease communities and their stakeholders. The evidence can be interrogated and democratized for real-world use cases such as disease-specific and natural history studies; treatment effectiveness and quality of life measurements; epidemiology and burden of disease; and drug development.

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How Rare Central Benefits Rare Disease Stakeholders

Patients & Advocacy

  • Accelerate research for the development of new treatments & possible cures
  • Increase awareness of your rare disease
  • Improve time to diagnosis
  • Generate interest and support for research & funding

Researchers & Medical Centers

  • Development of biomarkers, endpoints (treatment effectiveness, symptomatic events, etc.)
  • Development of evidence to support research and publications
  • Improvement in patient care and quality of life
  • Possibility of developing treatment guidelines

Sponsors & Industry

  • Recruitment for clinical trials
  • Identification of molecular compounds
  • Leveraging natural history as comparator arms for clinical trials
  • Pricing reimbursement analysis
  • Post marketing support – efficacy, adverse events, etc.

Rare Central Pioneer Program – Partnering for the Journey Ahead

To celebrate the launch of Rare Central, we are committed to the support of patient groups through our Pioneer Program. Patient groups registered as a legal entity can apply (below) to be one of the three Pioneers to our program. This program will offer successful applicants their first year entirely free providing a valuable opportunity to smaller patient groups. We look forward to receiving applications from our passionate community.  Contact us to learn more about the program.

Contact Us

Rare Central Pioneer Program Application

Please enable JavaScript in your browser to complete this form.
Please confirm that your organization has been legally established as a rare disease foundation or charity
If selected as a Pioneer, are you able to commit to serving as an ambassador within the rare disease community (LINK: see Pioneer Account commitment here)
Has your organization been directly involved in any clinical trials?
Has a registry been set up for your disease, whether by your organization or another?
How much of a priority is it for your organization to set up, support, or expand a registry for your disease?
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