We Do Data Right.

Our Partners

healthie™, our technology platform, considers the
needs of the patient, patient advocacy, medical and scientific researchers, and industry partners.
Logo for CDKL5, LouLou Foundation, and the Orphan Disease Center, Pulse Infoframe partners
CDKL5 Registry

The CDKL5 Registry, launched in March 2018 and funded by the LouLou Foundation, is dedicated to advancing research into CDKL5 Deficiency Disorder. This registry aims to increase understanding of CDD’s natural history, accelerate the development of therapeutics, and support clinical trials of prospective treatments.

Created in collaboration with the Orphan Disease Center at the Perelman School of Medicine, University of Pennsylvania.

Logo for Bowel Cancer Australia, a Pulse Infoframe partner
Bowel Cancer Australia
Bowel Cancer Australia is the leading community-funded charity dedicated to prevention, early diagnosis, research, quality treatment, and the best care for everyone affected by bowel cancer. We believe in a future where no Australian dies from bowel cancer and where all those diagnosed receive the expert care and support they need. For more information, visit bowelcanceraustralia.org.
Logo for Cytel, a Pulse Infoframe partner
Cytel and Pulse Infoframe are collaborating to support drug development sponsors seeking to implement real-world evidence solutions. Both companies will combine their expertise to channel real-world evidence toward ground-breaking new treatments in rare disease. Cytel, a leader in the field of advanced analytics for life sciences decision makers, has spent the last thirty years pioneering new methods to ensure data reveals its full value. It is one of the few companies that has had regulatory success obtaining drug approval by leveraging real-world data as a synthetic control arm in a clinical trial. The new collaboration builds on Cytel’s expertise in clinical trial design and real-world data solutions.
Logo for the Critical Path Institute, a Pulse Infoframe partner
Critical Path Institute (C-Path)

Critical Path Institute (C-Path) and Pulse Infoframe are collaborating to advance technologies and tools to further rare disease research and drug development. A single rare disease often does not produce enough data to develop treatments. The two organizations will identify opportunities to combine Pulse Infoframe’s ambispective data with retrospective data in C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®) to support new models, tools and data standards based on that data. Instead of researchers being limited to symptoms of a single disease, for example, they can study a symptom that is common to several diseases, thereby increasing the amount of data available to them.

Logo for Jazz Pharmaceuticals, a Pulse Infoframe partner
Jazz Pharmaceuticals
Jazz has collaborated with Pulse Infoframe, Inc, and leading researchers in the field of pediatric sleep medicine to launch the CATNAPTM Pediatric Narcolepsy Registry – Children, Adolescents, and their providers: The Narcolepsy Assessment Partnership. It is one more step in Jazz’s commitment to leading the evolution of sleep medicine for patients with sleep disorders and other neurological conditions. Read more about CATNAPTM here. For more information, email catnap@pulseinfoframe.com.
Logo for PIP-UK, a Pulse Infoframe partner
PIP-UK: Poland Syndrome Support & NEtwork

PIP-UK is joining Rare Central, the rare disease platform powered by Pulse Infoframe, to create the UK Poland Syndrome Community Register. This patient registry will document the Poland Syndrome community’s patient experience to advance research and improve health outcomes.

Logo for the Alport Syndrome Foundation, a Pulse Infoframe partner
Alport Syndrome Foundation

Alport Syndrome Foundation is the leading patient-led, independent, non-profit organization in the United States educating and giving a voice to the Alport syndrome community. Its mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy and research. Its vision is to conquer Alport syndrome.

Other Disease Registries

Pulse Infoframe has supported longitudinal prospective studies and registries for over 25 diseases and collaborated with over 10 global pharma partners seeking to understand natural history of disease, treatment effectiveness, and burden of illness.

Spotlight registry platforms and partnerships include:

  • Uveal melanoma, sponsored by Immunocore
  • Global breast, lung, and melanoma cancer registry platforms
  • Castleman’s disease
  • Sudden cardiac death
  • Friedreich’s ataxia

Solutions Partners

Logo for Quinten Health, a Pulse Infoframe partner
Quinten Health
The joint partnership between Pulse Infoframe and Quinten Health will provide our clients with a full suite of advanced analytics and artificial intelligence/machine learning technologies for designing and conduct real-world studies to accelerate and advance precision medicine.
Logo for QualityMetric, a Pulse Infoframe partner

This partnership has the potential to transform the rare disease space by combining QualityMetric’s clinical outcomes assessment scientific expertise, PRO data science, and technology with Pulse Infoframe’s data science expertise and comprehensive real-world data platform for evidence generation and regulatory decision-making solution.

QualityMetric instruments will be available as part of Pulse Infoframe’s Rare Central™ offering, simplifying configuration and start-up time. This globally deployed rare disease patient registry platform can integrate with many healthcare data sources, including EHR, claims, genomics, and existing registries. Its technology allows a defined data dictionary and applies the latest global data mapping standards, including OMOP and CDISC, to facilitate FDA/EMA-ready research.