Real-world industry round-up: collaboration to employ real-world evidence in value assessments of novel treatments

This month: Raremark and TriNetX partner to utilize real-world evidence to enable more clinical trials for rare diseases, the first two datasets have been uploaded to the PIONEER big data platform and more!

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Mar 02, 2020
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In this first installment of our regular monthly column, we summarize a selection of key real-world evidence industry developments that have taken place over the past month.

The news highlights:

The ICER and Aetion collaborate to employ real-world evidence in value assessments
Raremark and TriNetX partner to enable more clinical trials for rare diseases through using real-world evidence
CIBMTR® and IQVIA to employ real-world data to transform patient experiences with cell therapies
PIONEERing improved healthcare for individuals with prostate cancer: a milestone as two datasets are uploaded to the big data platform
NICE may consider real-world data when developing future NHS guidance
Partnership to derive clinical insights from global real-world data network


The ICER and Aetion collaborate to employ real-world evidence in value assessments

As part of the Institute for Clinical and Economic Review’s (ICER; MA, USA) commitment to expand its use of real-world evidence in value assessment and decision making, it has announced it is partnering with Aetion (NY, USA) to generate decision-grade real-world evidence.

Carolyn Magill, CEO of Aetion, explained: “While the use of [real-world evidence] in health technology assessment is not new, improved methods and tools are fueling increased adoption. Integrating [real-world evidence] into ICER's assessments will advance how we as a health care industry — and a society — determine value.”

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Raremark and TriNetX partner to enable more clinical trials for rare diseases through using real-world evidence

TriNetX (MA, USA), a global health research network that generates and employs real-world evidence to advance clinical trials and research, has announced its partnership with Raremark (London, UK) – a rare disease patient data platform. The collaboration hopes to provide patients in the Raremark platform with greater opportunities to participate in essential clinical trials by allowing TriNetX to make data on Raremark patient demographics and diagnoses available on its platform.

Steve Lethbridge, Senior Vice President of the Global Data Network at TriNetX, commented: “This exciting new partnership with Raremark adds valuable patient communities to the network and makes patients and their families aware of clinical trial opportunities...This partnership complements our existing network data and will help pharma and CROs find the patients they need for rare disease clinical trials.”

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CIBMTR® and IQVIA to employ real-world data to transform patient experiences with cell therapies

The Center for International Blood and Marrow Transplant Research® (CIBMTR®; MN, USA) and IQVIA (NC, USA) have jointly announced their collaboration to leverage IQVIA’s analytic expertise and the CIBMTR’s data collection capabilities to optimize real-world data for the benefit of patients, providers and other key stakeholders.

India Hook-Barnard, Senior Vice President at the CIBMTR, commented: “Through this initiative, the CIBMTR will strengthen its position in collecting timely, high-quality data and driving data standards wherever possible to accelerate discovery and new frontiers in precision medicine and real-world evidence.”

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PIONEERing improved healthcare for individuals with prostate cancer: a milestone as two datasets are uploaded to the big data platform

Erasmus University Medical Centre (Rotterdam, Netherlands) has uploaded the first two datasets to the Prostate cancer dIagnOsis and treatmeNt Enhancement through the power of big data in EuRope (PIONEER) big data platform, which seeks to improve care and treatment decision making for individuals with prostate cancer.

The datasets – from the Prostate cancer Research International Active Surveillance (PRIAS) study and the European Randomised study of Screening for Prostate Cancer (ERSPC) – represent two of the largest, most established datasets concerning individuals with prostate cancer in Europe. 

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NICE may consider real-world data when developing future NHS guidance

Following public and stakeholder consultation on its expanded data sources proposal from June–September 2019, the National Institute for Health and Care Excellence (London, UK) has released a finalized statement of intent concerning its current use of data and plans to expand consideration of various additional data sources in the future development of guidance, which could include real-world data sources such as electronic health records.

In its finalized statement of intent, NICE stated: “NICE welcomes the opportunity to continue our well-established practice of translating evidence into practical guidance and advice, and to expand our methods and processes to enable more extensive and effective use of broader sources of data.”

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Partnership to derive clinical insights from global real-world data network

Clinerion (Basel, Switzerland) and Datametrix (Neuchâtel, Switzerland) have announced their partnership aiming to generate clinically relevant real-world evidence, informing on real-world health outcomes, by leveraging and analyzing real-world data from Clinerion’s global hospital network.

Ahmed El Rhali, President and CEO of Datametrix, stated: “Together, Datametrix and Clinerion can power real-world evidence research and bring insights in the realities of clinical practice, which is acutely relevant for pharmaceutical industry, field-leading clinicians, hospital management, healthcare policy makers and, of course, patients.”

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