Registries and ongoing real-world evidence studies

Collection of comprehensive patient genomic and clinical data is important for advancing the therapeutic field and better understanding how treatments may be personalized to achieve optimal outcomes for MM.

Generation of RWE to aid this research is therefore more important than ever, and several programs and registries are currently aiming to prospectively collect as much information about the disease course and therapeutic outcomes of MM patients as possible.

A clinical data registry is an interactive database that collects, organizes, and displays healthcare information.1 A data set is defined as a standard set of information that is generated from care records or a system that captures the data.2

The information below provides an overview of currently available data sets, as well as registries and ongoing real-world evidence studies looking at MM. Please note this is not a comprehensive list of data sets. Furthermore, many of these are not specific to MM, but because of the breadth of the data they contain they can be mined for and analyze a cohort of MM patients. This page will be periodically updated as more information becomes available, so please check back here to review updated information.

The information below has been gathered from the external sources indicated and is provided for informational purposes only. For more information please consult the sources directly.

Overview of MM data sets

IQVIA: RWE network in Europe that can be used to support the drug development lifecycle from the optimization of clinical trials through commercialization

Flatiron: The Flatiron platform is a US database that captures and normalizes both structured and unstructured oncology data from sources such as laboratories, research repositories, payer networks and EHR data to generate real-world data that can be analyzed to improve the care of cancer patients

COTA: COTA’s focus and expertise centers around the collection and analysis of RWE to support cancer research and improve the care of cancer patients

HARMONY BigData Platform: A central repository where anonymous data are collected securely, harmonized and analyzed to improve the treatment of hematologic malignancies

SEER: SEER collects data on cancer cases from various locations and sources throughout the United States. Data collection began in 1973 and continues to expand to include even more areas and demographics today

Ongoing MM registries and studies harnessing RWD

CoMMpass Study: Designed to provide researchers with more information about myeloma, by collecting data from 1,150 patients from 76 sites worldwide over the course of their disease, starting from when they were newly diagnosed

Connect® MM: The earliest and largest prospective observational study in the United States, with 3,011 newly diagnosed MM patients enrolled across 250 sites

INSIGHT MM: The largest prospective, global, non-interventional, observational study enrolling 4,307 patients with newly diagnosed or relapsed/refractory MM

EBMT: The European Society for Blood and Marrow Transplantation Registry was established in 1974 and as of 2018 had acquired data on >500,000 patients given a hematopoietic stem cell transplantation procedure

HUMANS: The Health Outcome and Understanding of Myeloma – a multi-national real-world evidence (HUMANS) study – aims to characterize patient characteristics, treatment patterns, and outcomes for newly diagnosed patients with MM who received first-line treatment (N=2,451)

Tools supporting patient generated real-world data

HealthTree: HealthTree is a tool created by Myeloma Crowd for patients to navigate their myeloma over the lifetime of their disease, with the option to participate in research on disease experience

Noona: Noona is a smart cloud-based mobile service designed to capture patient-reported outcomes in oncology, by remotely monitoring symptoms to track the impact of treatment on the patient’s quality of life

1. National Quality Registry Network. What is a Clinical Data Registry? Available at: OneSource/what-is-a-clinical-data-registry_HO.pdf. Last accessed September 2021. 2. NHS Digital. Data sets. Available at: Last accessed September 2021.


EHR, electronic health records; EMR, electronic medical records; MM, multiple myeloma; RWD, real-world data; RWE, real-world evidence; SEER, Surveillance, Epidemiology, and End Results.