To accelerate scientific research on Hematologic Malignancies (HMs), broad cooperation between all healthcare stakeholders is urgently needed. Each single piece of the puzzle, namely each set of data, might turn out to be the missing piece that will make it possible to treat the disease faster and better.
The HARMONY Alliance has created a transparent and secure repository for data from various clinical studies. Everybody can contribute and help fight HMs.
Re-using data and open science
“Sharing data is crucial to further research in Hematological Malignancies because many of these cancers are heterogeneous in terms of their genetic profile. Moreover, many genetic profiles are rare; many account for <10% cases. In order to ascertain the prognostic or predictive value of genetic biomarkers, researchers need to study large cohorts of patients. This is only achievable by sharing data,” says Anthony Moorman, Newcastle University, one of the HARMONY Key Opinion Leaders for Childhood Leukemia and Project Leader of the HARMONY Research Project entitled ‘Use of Big Data to improve outcomes for patients with Acute Lymphoblastic Leukemia (ALL).
His research is focused on assessing risk factors for a relatively rare form of leukemia; without data sharing, he would not be able to move the research forward. Working with clinical trial data that have already been published, Anthony Moorman is identifying novel biomarkers for analysis of risk factors. The real advantage of doing this by using the HARMONY Big Data Platform is that it allows researchers to combine pediatric and adult clinical trial data, giving them greater power to understand the influence of various factors on patient outcomes.
“I already have positive responses from the clinical studies conducted in the EU. The total patient population we could achieve is around 20,000. A more realistic possibility would be around 10,000 – 15,000. If we do get that number by aligning pediatric and adult data, we will have assembled the largest clinical trial data set ever assembled anywhere. In this way, we’ll be able to find answers for difficult questions,” emphasizes Anthony Moorman.
What is he expecting from the HARMONY Project? “Robust and clear answers regarding the prognostic impact of various risk factors in childhood and adult Acute Lymphoblastic Leukemia”.
There are many more unanswered questions regarding Hematological Malignancies (HMs). To tackle new research challenges, we need to reach for new tools. Sharing data on the HARMONY Platform offers great potential. For the first time, scientists and the project partners, supported by algorithms and analytical tools, will have the ability to combine different data sets. From this point on, HM research on HMs enters a new era.
“We are really interested in accessing broader data sets to compare our data with other data. That’s my main aim – to achieve better results based on bigger data sets, and to help patients,” says Dirk Reinhardt, who represents the HARMONY Partner ‘German Society for Paediatric Oncology and Haematology’.
There is already a lot of valuable data from numerous clinical trials and research projects collected around the world. According to Statista, in 2017 there were 262,439 clinical studies registered worldwide. However, most of the existing data sources remain unavailable for further use. Secondary data – collected on one dedicated platform, harmonized, precisely filtered for statistical analyses, and anonymized – can lead to new discoveries. Increasing computing power and progress in data sciences allow us to analyze huge amounts of data in of the search for new treatments, drugs, and knowledge about diseases. What’s more, existing regulations provide the relevant ethical and legal framework to ensure privacy and data protection. If there’s even a small chance to help patients, we have to seize this opportunity, this is a principle that follows a multidisciplinary and partnership of various stakeholders under the umbrella of the HARMONY Alliance.
About the HARMONY Alliance: a public-private European Network of Excellence for Big Data in Hematology, established in January 2017. Our mission is to unlock and spread valuable knowledge on hematologic malignancies (blood cancers) among a large number of stakeholders, with the goal to harness and mine Big Data to speed up the development of improved treatments for patients and more effective treatment strategies. HARMONY currently has 53 Partners and 35 Associated Members from 22 countries. HARMONY funded through the Innovative Medicines Initiative (IMI) (LINK), 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 the European Federation of Pharmaceutical Industries and Associations (EFPIA) (LINK). IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe. Read more >
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