FAQ

The large number of stakeholders (90 organizations per November 2019) across different European countries (22 so far) makes a fragmented playing field, from basic hematology research all the way to approval processes for new medicines.

For blood cancers, BigData means gathering into one single database clinical, genetic and molecular information on patients and diseases which is currently maintained in a number of individual databases from clinical trials and registries in different countries. The HARMONY Alliance is orchestrating the consolidation of all databases into one common platform. This will harness the enormous potential of BigData and BigData analytics to deliver insights into how the care of patients with blood cancers can be improved.

Cancers are highly individual but most of today’s treatments are unspecific. Chemotherapy/radiation therapy are used against many different cancers but are not the best imaginable treatments. The HARMONY Big Data platform will provide more granular data on patients and molecules that will enable researchers to focus their research efforts on the specific blood cancers. Individualized therapies that zoom in on a specific types of cancer are believed to be more effective and associated with fewer side effects. View the partners in the HARMONY Patient Cluster >

The HARMONY Alliance is a public-private European Network of Excellence, established in January 2017. 53 Partners and 35 Associated Members from 22 countries. Funded through the Innovative Medicines Initiative (IMI), Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients. HARMONY has received funding from IMI 2 Joint Undertaking and is listed under grant agreement No. 116026. This Joint Undertaking receives support from the European Union’s Horizon 2020 Research and Innovation Programme and EFPIA. Read more >

Your data is crucial! Co-operative Working Groups, Hospitals, Academic Institutions, or any other type of organization are kindly invited to join the HARMONY Alliance as an Associated Member. We welcome data providers in ALL, AML, CLL, MDS, MM, NHL, Pediatric HMs. Please contact us and we will guide you through the next steps.

Read more about the HARMONY focus on 7 Hematologic Malignancies. Check our current Research Projects.

Yes, welcome! The HARMONY Alliance is an open initiative and we have established mechanisms to enrol other stakeholders. A Policy Health Stakeholder Feedback Forum, has been set up to interact and with the 6 stakeholder clusters: patient organizations, hematologists, medicines authorities, HTA bodies, payers, and the pharmaceutical industry. If you are interested in contributing to HARMONY in some form other than providing data, please contact us.

Epidemiologists study the causes and patterns of human diseases including cancer. In the era before big data, they discovered that smoking causes the vast majority of lung cancer cases. Now big data is allowing them to answer even bigger questions in cancer research. This new era of epidemiology takes advantage of the availability of large collections of hospital records and genomic data, leading to new insights into diverse cancers in diverse populations. Learn more about the largest public-private partnership in Europe for Big Data in Hematology >

The ability to sequence the DNA of large numbers of tumors has allowed researchers to understand the genetic changes underlying certain cancers. Scientists can use this information to help test potential new medicines that might target some of these genetic changes or drivers of cancer growth. Big data sets from preclinical studies are being used to help predict which medicines or combinations of medicines might be good candidates to move forward into clinical trials in humans. Read about the HARMONY Big Data Platform >

Knowing a patient’s prognosis allows medical teams to decide how aggressively to treat each cancer and what steps to take after a tumor is gone. By analyzing information from incredibly large and diverse groups of patients, big data is helping to predict long-term outcomes. For example, doctors can use this information to determine who should receive additional treatment and who might avoid it because their cancer is unlikely to recur.

The HARMONY Patient Cluster is a unique group of 7 European Patient Umbrella Organizations working in the different areas of hematological diseases within the HARMONY Alliance: our patient cluster.

​​While clinical trials provide valuable information to doctors on how medicines may work, only about 2% of people with cancer participate in clinical trials. However, thousands of people are diagnosed and treated every day, which means there is a huge amount of important data that could be obtained to help doctors and patients make better decisions about treatment options and potential outcomes. Multiple initiatives have been established to capture some of these data, connecting doctors with scientists with ICT professionals with patients, all aiming to help to inform decisions about treatments. Read about European approach in hematology >

The HARMONY Alliance uses big data technologies to improve the treatment of 7 blood cancers - Hematologic Malignancies (HMs): Acute lymphoblastic leukemia (ALL), Acute Myeloid Leukemia (AML), Chronic Lymphocytic Leukemia (CLL), Myelodysplastic Syndromes (MDS), Non-Hodgkins Lymphoma (NHL), Multiple Myeloma (MM) and Pediatric Hematologic Malignancies. Read about the research questions in each of the 7 HMs >

Blood cancers, or hematologic cancers, account for about 40% of cancer cases in children and about one third of cancer deaths. Important blood cancers are leukemia, lymphoma, and myeloma. The cancers affect the production and function of various blood cells. There is a need for improved treatments for blood cancers. Individual cancers usually need specific therapies. Bone marrow transplant is still a common option, as are chemotherapy and radiation therapy. As many blood cancers are rare and healthcare practice varies across Europe, a lack of data on relevant outcomes represents a challenge for clinicians, researchers, and other decision-makers like regulators and HTA bodies.

To ensure that people trust technology, responsible privacy and security guidelines must be developed. HARMONY takes great care to follow ethical principles for biomedical research to ensure that no mistakes are made. One example is personal data security. Moreover, we must ascertain the quality of the data and their analysis, as only sound science is ethically justifiable. Read about the HARMONY Anonymization Concept and safety measurements >

The HARMONY Big Data Platform is unique and one of a kind. The Big Data Platform was developed in 2017 and hosts multiple types of data. To ensure that the descriptive, comparative, and predictive information generated by the analyses performed on the data platform is reliable, one of our priorities is to determine the quality of the data. Read more >

The HARMONY Big Data Platform offers a wide range of anynomized data such as: DEMOGRAPHIC AND MEDICAL HISTORY DATA, DIAGNOSIS DATA, OMICS DATA, TREATMENT DATA, Quality of Life DATA, HEALTHCARE ECONOMIC RESOURCES DATA. Your data is crucial! If you are a data owner (Co-operative Working Groups, Hospitals, Academic Institutions, or any other type of organization) you are kindly invited to join the HARMONY Alliance as an Associated Member. Please contact us >

European data protection legislation is a complex topic involving not only EU law, but also legislation in individual member states. To deal efficiently with this complexity, HARMONY relies on an independent Ethics Advisory Board, external legal counselling as well as legal counsel from within the partnership EFPIA companies. Work is ongoing to extend the network of EFPIA legal advisors and to form a network of representatives from local ethics committees, respectively. Read about the HARMONY Anynomization Concept and how HARMONY secures Data Quality, Safety, and Privacy >

In meeting the challenge of identifying trends and correlations that will improve patient treatment and enhance the decision-making and diagnostic skills of all the stakeholders, we divided the work between 8 separate, but interconnected teams, Work Packages, responsible for: Project Management; Definition of Outcomes; Data Access; Data Platform; Data Analytics; Payer/Provider/HTA/EMA Alignment; Dissemination/Communication; Legal/Ethical/Governance; Read more: work packages.

Our main purpose is collecting multidisciplinary European data sets to respond to clinical questions and implement new treatment strategies on blood diseases. To achieve this goal, we bring together the European hematological community. We embrace initiatives that welcome the involvement of more European data custodians as Associated Members. Contact us: Contact.

We currently have 53 Partners: https://www.harmony-alliance.eu/en/partners and 37 Associated Members https://www.harmony-alliance.eu/associated-members from 22 countries. Included as Partner are 7 European umbrella Patient Organizations.

We believe that Big Data will empower clinicians, patients, and policy stakeholders to develop better therapy access and improved care for patients with various HMs: vision.