| Autor: |
Erica Wood, Mary-Ann Anderson, Leanne Berkahn, Chan Cheah, Michael Dickinson, Maher Gandhi, Pratyush Giri, Eliza Hawkes, Anna Johnston, Colm Keane, Zoe McQuilten, Stephen Mulligan, Dipti Talaulikar, Stephen Opat, Judith Trotman, Janne Williams, Tasman Armytage, Allison Barraclough, Duncan Carradice, Geoffrey Chong, Tara Cochrane, Nada Hamad, Matthew Ku, Denise Lee, Susan Morgan, Howard Mutsando, Manjunath Narayana, Miles Prince, Sumita Ratnasingam, Joel Wight, Xavier Badoux, Gavin Cull, Byrone Kuss, Paula Marlton, Constantine Tam, Joshua Casan, Tania Cushion, Aditya Tedjaseputra, Simone Birch, Christina Brown, David Ellis, Yasmin Harvey, Sam Hitchins, Sanjiv Jain, Peter Jessup, Surendar Juneja, Daniel Kearney, Beena Kumar, Stephen Lade, Kenneth Lee, Connull Leslie, Eileen Long, Adrienne Morey, Lakshmi Nath, Debra Norris, Andrew Parker, Jeremy Parry, Fiona Pin-Yen Chen, Eliza Chung, Jessica Morison, Luke Rowsell, Gayathri St George, Christianto Thu, Neil Waters, Cameron Wellard, Michelle Zheng |
| Rok vydání: |
2022 |
| Popis: |
Background Lymphoma is a malignancy of lymphocytes and lymphoid tissues comprising a heterogeneous group of diseases, with up to 80 entities now described. Lymphoma is the 6th most common cancer in Australia, affecting patients of all ages, with rising incidence rates. With the proliferation of efficacious novel agents, therapeutic strategies are increasingly diverse and survival is improving. There is a clear need for contemporary robust and detailed data on diagnostic, investigational and management strategies for this disease in Australia, New Zealand and worldwide, to inform and benchmark local and international standards of care. Clinical quality registries can provide these data, and support development of strategies to address variations in management, including serving as platforms for clinical trials and research. The Lymphoma and Related Diseases Registry (LaRDR) was developed to capture details of patient demographics, disease characteristics, and management throughout their disease course and therapy and to develop outcome benchmarks nationally and internationally for lymphoma. This report describes the aims, development and implementation of the LaRDR, as well as challenges addressed in the process.Methods The LaRDR was established in 2016 as a multicentre, collaborative project at sites across Australia with a secure online database which collects prospective data on patients with a new diagnosis of lymphoma or chronic lymphocytic leukaemia (CLL). LaRDR development required multidisciplinary participation including specialist haematology, information technology, and biostatistical support, as well as secure funding. Here we describe the database development, data entry, ethics approval process, registry governance and support for participating sites and the coordinating centre.Results To date more than 4,700 patients have been enrolled from 27 sites. Multiple challenges arose during the development, which we describe, along with approaches used to overcome them. Several confirmed international collaborations are now in place, and the registry is providing valuable data for clinicians, researchers, industry and government, including through presentations of results at major national and international conferences.Conclusion Challenges in establishing the LaRDR have been successfully overcome and the registry is now a valuable resource for lymphoma clinicians, researchers, health economists and others in Australia and globally. |
| Databáze: |
OpenAIRE |
| Externí odkaz: |
|
