Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions
Abstract Background One objective of the Belgian Rare Diseases plan is to improve patients’ management using phenotypic tests and, more specifically, the access to those tests by identifying the biochemical analyses used for rare diseases, developing new financing conditions and establishing referen...
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doaj-2dc4256c7b404443ba1a0495f3f1c7942021-02-21T12:10:12ZengBMCOrphanet Journal of Rare Diseases1750-11722021-02-0116111610.1186/s13023-021-01728-1Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditionsNathalie M. Vandevelde0Pieter Vermeersch1Katrien M. J. Devreese2Marie-Françoise Vincent3Béatrice Gulbis4François Eyskens5François Boemer6André Gothot7Viviane O. Van Hoof8Carolien Bonroy9Hedwig Stepman10Geert A. Martens11Xavier Bossuyt12Laurence Roosens13Julie Smet14Hilde Laeremans15Ilse Weets16Jean-Marc Minon17Kris Vernelen18Wim Coucke19Advisory Board of the Action 1 of the Belgian National Plan for Rare DiseasesDepartment of Quality of Laboratories, SciensanoRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyCenter of Inherited Metabolic Diseases, Antwerp University HospitalRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyRare Diseases Working Group, Belgian National Commission on Clinical PathologyClinical Pathology, LHUB-ULB, Université Libre de BruxellesLaboratory of Pediatric Research, Free University of BrusselsRare Diseases Working Group, Belgian National Commission on Clinical PathologyLaboratory and Department of Blood Transfusion, CHR de la CitadelleDepartment of Quality of Laboratories, SciensanoDepartment of Quality of Laboratories, SciensanoAbstract Background One objective of the Belgian Rare Diseases plan is to improve patients’ management using phenotypic tests and, more specifically, the access to those tests by identifying the biochemical analyses used for rare diseases, developing new financing conditions and establishing reference laboratories. Methods A feasibility study was performed from May 2015 until August 2016 in order to select the financeable biochemical analyses, and, among them, those that should be performed by reference laboratories. This selection was based on an inventory of analyses used for rare diseases and a survey addressed to the Belgian laboratories of clinical pathology (investigating the annual analytical costs, volumes, turnaround times and the tests unavailable in Belgium and outsourced abroad). A proposal of financeable analyses, financing modalities, reference laboratories’ scope and budget estimation was developed and submitted to the Belgian healthcare authorities. After its approval in December 2016, the implementation phase took place from January 2017 until December 2019. Results In 2019, new reimbursement conditions have been published for 46 analyses and eighteen reference laboratories have been recognized. Collaborations have also been developed with 5 foreign laboratories in order to organize the outsourcing and financing of 9 analyses unavailable in Belgium. Conclusions In the context of clinical pathology and rare diseases, this initiative enabled to identify unreimbursed analyses and to meet the most crucial financial needs. It also contributed to improve patients’ management by establishing Belgian reference laboratories and foreign referral laboratories for highly-specific analyses and a permanent surveillance, quality and financing framework for those tests.https://doi.org/10.1186/s13023-021-01728-1Rare diseasesClinical pathologyFinancingReference laboratoriesReimbursement codesExpertise |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Nathalie M. Vandevelde Pieter Vermeersch Katrien M. J. Devreese Marie-Françoise Vincent Béatrice Gulbis François Eyskens François Boemer André Gothot Viviane O. Van Hoof Carolien Bonroy Hedwig Stepman Geert A. Martens Xavier Bossuyt Laurence Roosens Julie Smet Hilde Laeremans Ilse Weets Jean-Marc Minon Kris Vernelen Wim Coucke Advisory Board of the Action 1 of the Belgian National Plan for Rare Diseases |
spellingShingle |
Nathalie M. Vandevelde Pieter Vermeersch Katrien M. J. Devreese Marie-Françoise Vincent Béatrice Gulbis François Eyskens François Boemer André Gothot Viviane O. Van Hoof Carolien Bonroy Hedwig Stepman Geert A. Martens Xavier Bossuyt Laurence Roosens Julie Smet Hilde Laeremans Ilse Weets Jean-Marc Minon Kris Vernelen Wim Coucke Advisory Board of the Action 1 of the Belgian National Plan for Rare Diseases Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions Orphanet Journal of Rare Diseases Rare diseases Clinical pathology Financing Reference laboratories Reimbursement codes Expertise |
author_facet |
Nathalie M. Vandevelde Pieter Vermeersch Katrien M. J. Devreese Marie-Françoise Vincent Béatrice Gulbis François Eyskens François Boemer André Gothot Viviane O. Van Hoof Carolien Bonroy Hedwig Stepman Geert A. Martens Xavier Bossuyt Laurence Roosens Julie Smet Hilde Laeremans Ilse Weets Jean-Marc Minon Kris Vernelen Wim Coucke Advisory Board of the Action 1 of the Belgian National Plan for Rare Diseases |
author_sort |
Nathalie M. Vandevelde |
title |
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
title_short |
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
title_full |
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
title_fullStr |
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
title_full_unstemmed |
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
title_sort |
belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions |
publisher |
BMC |
series |
Orphanet Journal of Rare Diseases |
issn |
1750-1172 |
publishDate |
2021-02-01 |
description |
Abstract Background One objective of the Belgian Rare Diseases plan is to improve patients’ management using phenotypic tests and, more specifically, the access to those tests by identifying the biochemical analyses used for rare diseases, developing new financing conditions and establishing reference laboratories. Methods A feasibility study was performed from May 2015 until August 2016 in order to select the financeable biochemical analyses, and, among them, those that should be performed by reference laboratories. This selection was based on an inventory of analyses used for rare diseases and a survey addressed to the Belgian laboratories of clinical pathology (investigating the annual analytical costs, volumes, turnaround times and the tests unavailable in Belgium and outsourced abroad). A proposal of financeable analyses, financing modalities, reference laboratories’ scope and budget estimation was developed and submitted to the Belgian healthcare authorities. After its approval in December 2016, the implementation phase took place from January 2017 until December 2019. Results In 2019, new reimbursement conditions have been published for 46 analyses and eighteen reference laboratories have been recognized. Collaborations have also been developed with 5 foreign laboratories in order to organize the outsourcing and financing of 9 analyses unavailable in Belgium. Conclusions In the context of clinical pathology and rare diseases, this initiative enabled to identify unreimbursed analyses and to meet the most crucial financial needs. It also contributed to improve patients’ management by establishing Belgian reference laboratories and foreign referral laboratories for highly-specific analyses and a permanent surveillance, quality and financing framework for those tests. |
topic |
Rare diseases Clinical pathology Financing Reference laboratories Reimbursement codes Expertise |
url |
https://doi.org/10.1186/s13023-021-01728-1 |
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