Access the Northwestern Non-Hodgkin Lymphoma Registry

Next-Generation Non-Hodgkin Lymphoma Registry with an Ontology-Based Approach and Data Fusion

National Plan for Research and Development and Innovation for the period 2015-2020 (PNCDI III)
Program 1 - Development of the National Research and Development System: Subprogram 1.1 - Human Resources
Postdoctoral Research Projects - Competition 2016

project Director: DR.BOGDAN FETICA
Mentor: PROF.DR.ALEXANDRU IRIMIE
Acronym: NextGenRel
Code: PN-III-P1-1.1-PD-2016-0124
Promoter: INSTITUTE OF ONCOLOGY "PROF.DR.I.CHIRICUTA" CLUJ-NAPOCA
The Contracting Authority: Executive Unit for Financing Higher Education, Research, Development and Innovation - UEFISCDI
Contract no.: 118 / 2018
Total Buget: 250.000 RON
Public Buget: 250.000 RON
Duration: 02.05.2018 - 31.10.2020

We intend to develop and implement a new-generation Non-Hodgkin (NHL) lymphoma registration platform that allows for the collection, aggregation and exchange of demographic, clinic, epidemiologic, histopathologic, molecular and therapeutic data in a comprehensive way and of high quality throughout the NHL network we plan to establish in the Northwest of Romania. We expect this registry to reliably represent the lymphoma scene in our region and become a management model that can be replicated for all haematological malignancies and at national level.

Project Description

Publications related to the project

Classification of non-Hodgkin lymphoma in South-eastern Europe: review of 632 cases from the international non-Hodgkin lymphoma classification project
S Dotlic, AM Perry, G Petrusevska, B Fetica, J Diebold, KA MacLennan, HK Müller-Hermelink, BN Nathwani, E Boilesen, M Bast, JO Armitage, DD Weisenburger
British Journal of Haematology, 171, 366–372 (2015). doi: 10.1111/bjh.13586

Non-Hodgkin lymphoma in Romania: a single-centre experience
B Fetica, P Achimas-Cadariu, B Pop, D Dima, L Petrov, AM Perry, BN Nathwani, HK Müller-Hermelink, J Diebold, KA MacLennan, A Fulop, ML Blaga, D Coza, A Irimie, DD Weisenburger
Hematological Oncology, 35: 198–205 (2017). doi: 10.1002/hon.2266

High prevalence of viral hepatitis in a series of splenic marginal zone lymphomas from Romania
B Fetica, B Pop, ML Blaga, A Fulop, D Dima, MT Zdrenghea, CI Vlad, AS Bojan, P Achimas-Cadariu, CI Lisencu, A Irimie, DD Weisenburger
Blood Cancer Journal , volume 6, page e498 (2016). DOI: 10.1038/bcj.2016.102

The role of medical registries, potential applications and limitations
Bogdan Pop, Bogdan Fetica, Mihaiela Luminita Blaga, Adrian Pavel Trifa, Patriciu Achimas-Cadariu, Catalin Ioan Vlad, Andrei Achimas-Cadariu
Clujul Medical , (Ahead Print) (2018). DOI: 10.15386/cjmed-1015

Ontology-Based Search Procedure to Identify Tissue Samples in an Autopsy Archive: A Pilot Study
Bogdan Pop, Bogdan Fetica, Mihaiela Luminita Blaga, Dan Gheban, Patriciu Achimaş-Cadariu, Catalin Ioan Vlad, Andrei Achimaş-Cadariu
Applied Medical Informatics , 40(3-4):45-53 (2018)

Context

Non-Hodgkin's Lymphomas (NHL) are the most common haematological malignancies. Approximately 386,000 new NHL cases were recorded in 2012, more than half being diagnosed in developing countries. With regard to mortality caused by NHL, in 2012 there were 200,000 deaths, estimated worldwide (2.4% of all deaths from cancer) (GLOBOCAN).
NHL heterogeneity complicates registration of cases in general cancer registries. An essential step in the development of molecular, epidemiological or clinical research is the planning of research through the use of NHL quality data. It is the only way in which a causal relationship can be established for the etiological agents of the NHL, with particular aspects for our region.
These facts highlight the need for more comprehensive NHL data in Romania, and we believe that a registry devoted to this type of cancer is a necessary initial step.

Objectives

The project aims: Developing a method of registering NHL based on combined ontology and data fusion techniques for integrating patient data with administrative and demographic data from multiple sources to create an associated data set that could be interrogated in new ways.
Specific objective 1: Developing a complete NHL registration solution capable of delivering multisource data integration, semantic consistency, and data integrity following ENCR recommendations and in accordance with the Law on Cancer Registration in Romania.
Specific objective 2: Implementation of a population-based NHL registry in the NW Region of Romania, using the next generation NHL registration solution.
Specific objective 3: An NHL registration training program, open nationwide, to enable the dissemination of the registration tool and the results of the registry.

Impact

A fundamental impact on future research activities in the NHL's scientific field is the provision of data necessary for planning and identifying areas of interest that may influence the NHL situation in Romania. By developing a NHL-customized cancer registration solution, adaptable to most computer systems in medical institutions, cancer registration in Romania will be expanded through innovative and adapted methods.
From a social and economic point of view, the first beneficiaries of the project are NHL patients. The project will provide physicians and patients with reliable data on prognosis, therapeutic response and survival of NHL patients in Romania.
In the long run, our project has the role of contributing to a better understanding of biological variability in NHL pathogenesis, response to treatment, and promoting the development of innovative treatment strategies.

Work Plan

Stage	Name	Deadline	Status
1	The development of a complete new-generation NHL registration solution based on a versatile data fusion framework capable of delivering multiple source data integration, semantic coherence and data integrity with respect to ENCR recommendations for cancer registration and, specifically, lymphomas and in accordance with the cancer registration legislation in Romania. Obtaining and collecting information on key data sources by organizing a workshop on data source evaluation and quality verification with invited institutional representatives and important stakeholders from the Northwest part of Romania Analyzing the information obtained on key data sources, defining the list of mandatory and basic variables and their formats, defining the ontology for the NHL registration solution, defining the base data set and reporting routes Analysis of acquired information on diagnosis, therapy and reporting capacity of NHL cancer in the NV region of Romania Developing the beta version of the software solution (database and user interface) Participation in an international conference Project monitoring and preparation of reports required	31.12.2018	Finalized
2	Implementing a population-based NHL Registry in the North-West Region of Romania, using the next-generation registration solution - beta version Developing the beta version of the software solution (database and user interface) Data call for the registration of patients with Non-Hodgkin's lymphoma from the North-West Region of Romania - Phase I Statistical analysis of collected data from the NW region of Romania Organization of training seminars focused on cancer registration, especially when registering patients with Non-Hodgkin's lymphoma Develop an article for publication in an ISI quoted journal Project monitoring and preparation of reports required Administrative activities to implement the registry	31.12.2019	Finaliezed
3	Implementing a population-based NHL Registry in the North-West Region of Romania, using the next-generation registration solution - final version Launch of the final version of the software solution and data call for the registration of patients with Non-Hodgkin's lymphoma in the North-West Region of Romania - Phase II Completing an article for publication in an ISI quoted journal and participating in scientific events Project monitoring and preparation of reports required	31.10.2020	Ongoing

Events

14.11.2018 15:00 - Data Source Assessment and Quality Check Workshop, Hematology Department, Bvd. 21 Decembrie Nr. 73
Project presentation

10.10.2018 - 14.10.2018 Participation, oral presentation and organization of a workshop at the XXVth National Conference of Clinical Hematology and Transfusion Medicine: An Ontology-Based Specialized Non-Hodgkin Lymphoma Registry

29.09.2018 - 04.10.2018 Participation and presentation of a poster at the 19th Meeting of the European Association for Hematopathology: Primary extranodal non-Hodgkin lymphoma in the North-Western region of Romania: clinicopathological features and survival - see Abstract

26.09.2019 - 28.09.2019 Participation and presentation of a poster at the EORTC Cutaneous Lymphoma Meeting 2019 "Insights in research and patient care": Primary cutaneous lymphoma patterns in the North-Western region of Romania - see Abstract

Results

Results Stage 1:

Results Stage 2:

Results Stage 3:

Report on the validation of the new generation software for the registration of Non-Hodgkin's Lymphomas
Guide and recommendations for using the software platform
Article accepted for publication in a peer-reviewed specialized journal