needs of the patient, patient advocacy, medical and scientific researchers, and industry partners.
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.
The National Kidney Foundation has partnered with Pulse Infoframe in order to launched the first-ever national registry for patients at all stages of kidney disease, the NKF Patient Network.
This powerful research tool can improve the lives of people with kidney disease by better informing research, clinical care, drug development, and health policy decisions, as well as giving kidney patients the tools they need to stay educated and healthy. It will collect both rigorous clinical and laboratory data from electronic health records, in addition to patient-entered data, which together allow for a complete picture of the patient experience.
Read more about the network here.
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.
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.
Alport Syndrome Foundation is joining the National Kidney Foundation (NKF) Patient Network, powered by Pulse Infoframe’s healthie™ platform. The NKF Patient Network fosters data collaboration among patient advocacy groups with kidney disease. This, in turn, helps researchers and drug developers advance research by collecting real-world evidence across multiple kidney diseases.
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.
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
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.