The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]

Female genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haem...

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Main Authors: Oliva Rabozakandria, Russel Stothard, Tendai Munthali, Anouk Gouvras, Paul Kanfwa, Grace Hameja, Helen Ayles, Halwindi Hikabasa, Kwame Shanaube, Rhoda Ndubani, Anna Kildemoes, Olimpia Lamberti, Helen Kelly, Jennifer Fitzpatrick, Pytsje Hoekstra, Seke Kayuni, Bodo Randrianasolo, Amy Sturt, Nkatya Kasese, Augustine Choko, Sibone Mocumbi, Takalani Nemungadi, Elizabeth Ntapara, Anna Samson, Kevin Martin, Elizabeth Danstan, Anifrid Thomson, Ibrahim Rabiu, Chido Dziya Chikwari, David Chaima, Gifty Terkie, Bellington Vwalika, Karoline Joeker, Manuel Kasoka, Peter Leutscher, Amaya L. Bustinduy, Eyrun Kjetland, Louise Thomsen Schmidt Arenholt
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Language:English
Published: Wellcome 2025-04-01
Series:Wellcome Open Research
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Online Access:https://wellcomeopenresearch.org/articles/9-360/v2
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author Oliva Rabozakandria
Russel Stothard
Tendai Munthali
Anouk Gouvras
Paul Kanfwa
Grace Hameja
Helen Ayles
Halwindi Hikabasa
Kwame Shanaube
Rhoda Ndubani
Anna Kildemoes
Olimpia Lamberti
Helen Kelly
Jennifer Fitzpatrick
Pytsje Hoekstra
Seke Kayuni
Bodo Randrianasolo
Amy Sturt
Nkatya Kasese
Augustine Choko
Sibone Mocumbi
Takalani Nemungadi
Elizabeth Ntapara
Anna Samson
Kevin Martin
Elizabeth Danstan
Anifrid Thomson
Ibrahim Rabiu
Chido Dziya Chikwari
David Chaima
Gifty Terkie
Bellington Vwalika
Karoline Joeker
Manuel Kasoka
Peter Leutscher
Amaya L. Bustinduy
Eyrun Kjetland
Louise Thomsen Schmidt Arenholt
author_facet Oliva Rabozakandria
Russel Stothard
Tendai Munthali
Anouk Gouvras
Paul Kanfwa
Grace Hameja
Helen Ayles
Halwindi Hikabasa
Kwame Shanaube
Rhoda Ndubani
Anna Kildemoes
Olimpia Lamberti
Helen Kelly
Jennifer Fitzpatrick
Pytsje Hoekstra
Seke Kayuni
Bodo Randrianasolo
Amy Sturt
Nkatya Kasese
Augustine Choko
Sibone Mocumbi
Takalani Nemungadi
Elizabeth Ntapara
Anna Samson
Kevin Martin
Elizabeth Danstan
Anifrid Thomson
Ibrahim Rabiu
Chido Dziya Chikwari
David Chaima
Gifty Terkie
Bellington Vwalika
Karoline Joeker
Manuel Kasoka
Peter Leutscher
Amaya L. Bustinduy
Eyrun Kjetland
Louise Thomsen Schmidt Arenholt
author_sort Oliva Rabozakandria
collection DOAJ
description Female genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haematobium. Both diseases affect the sexual and reproductive health (SRH) of millions of people globally, especially in sub-Sahara Africa (SSA). Awareness and knowledge of these diseases is largely absent among affected communities and healthcare workers in endemic countries. Accurate burden of FGS and MGS disease estimates, single and combined, are absent, mostly due to lack of awareness of both diseases and absence of standardized methods for individual or population-based screening and diagnosis. In addition, there are disparities in country-specific FGS and MGS knowledge, research and implementation approaches, and diagnosis and treatment. There are currently no WHO guidelines to inform practice. The BILGENSA (Genital Bilharzia in Southern Africa) Research Network aimed to create a collaborative multidisciplinary network to advance clinical research of FGS and MGS across Southern African endemic countries. The workshop was held in Lusaka, Zambia over two days in November 2022. Over 150 researchers and stakeholders from different schistosomiasis endemic settings attended. Attendees identified challenges and research priorities around FGS and MGS from their respective countries. Key research themes identified across settings included: 1) To increase the knowledge about the local burden of FGS and MGS; 2) To raise awareness among local communities and healthcare workers; 3) To develop effective and scalable guidelines for disease diagnosis and management; 4) To understand the effect of treatment interventions on disease progression, and 5) To integrate FGS and MGS within other existing sexual and reproductive health (SRH) services. In its first meeting, the BILGENSA Network set forth a common research agenda across S. haematobium endemic countries for the control of FGS and MGS.
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spelling doaj-art-6dbd02fbb63e4bc999f79aedb14a4c852025-08-20T02:09:38ZengWellcomeWellcome Open Research2398-502X2025-04-01910.12688/wellcomeopenres.22429.226419The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]Oliva Rabozakandria0https://orcid.org/0000-0001-6345-0648Russel Stothard1https://orcid.org/0000-0002-1930-2944Tendai Munthali2Anouk Gouvras3https://orcid.org/0000-0002-7857-4309Paul Kanfwa4Grace Hameja5Helen Ayles6Halwindi Hikabasa7Kwame Shanaube8https://orcid.org/0000-0001-7899-0890Rhoda Ndubani9Anna Kildemoes10Olimpia Lamberti11Helen Kelly12Jennifer Fitzpatrick13Pytsje Hoekstra14https://orcid.org/0000-0002-7285-9223Seke Kayuni15Bodo Randrianasolo16Amy Sturt17https://orcid.org/0000-0003-3437-3334Nkatya Kasese18Augustine Choko19https://orcid.org/0000-0001-6095-9430Sibone Mocumbi20https://orcid.org/0000-0002-2475-2560Takalani Nemungadi21https://orcid.org/0000-0002-4912-1570Elizabeth Ntapara22Anna Samson23Kevin Martin24https://orcid.org/0000-0001-6561-1353Elizabeth Danstan25Anifrid Thomson26Ibrahim Rabiu27https://orcid.org/0000-0003-0267-1601Chido Dziya Chikwari28https://orcid.org/0000-0003-1617-3603David Chaima29Gifty Terkie30Bellington Vwalika31Karoline Joeker32Manuel Kasoka33Peter Leutscher34Amaya L. Bustinduy35https://orcid.org/0000-0001-6131-4159Eyrun Kjetland36https://orcid.org/0000-0002-5552-1095Louise Thomsen Schmidt Arenholt37Association K'OLO VANOVA, Antananarivo, MadagascarDepartment of Tropical Disease Biology, Liverpool School of Tropical Medicine, Liverpool, UKSchool of Public Health, University of Zambia, Lusaka, Lusaka Province, ZambiaGlobal Schistosomiasis Alliance, London, UKDepartment of gynaecology, University of Zambia, Lusaka, Lusaka Province, ZambiaDepartment of Neglected Tropical Diseases, Ministry of Health, Lusaka, ZambiaZambart School of Medicine, Lusaka, ZambiaSchool of Public Health, University of Zambia, Lusaka, Lusaka Province, ZambiaZambart School of Medicine, Lusaka, ZambiaZambart School of Medicine, Lusaka, ZambiaDepartment of Parasitology, Leiden University Medical Center, Leiden, The NetherlandsDepartment of Clinical Research, London School of Hygiene and Tropical Medicine (LSHTM), London, UKDepartment of Clinical Research, London School of Hygiene and Tropical Medicine (LSHTM), London, UKZambart School of Medicine, Lusaka, ZambiaDepartment of Parasitology, Leiden University Medical Center, Leiden, The NetherlandsDepartment of Tropical Disease Biology, Liverpool School of Tropical Medicine, Liverpool, UKAssociation K'OLO VANOVA, Antananarivo, MadagascarInfectious Diseases Section, Veterans Affairs Healthcare System, Palo Alto, USAZambart School of Medicine, Lusaka, ZambiaDepartment of Tropical Disease Biology, Liverpool School of Tropical Medicine, Liverpool, UKManhiça Health Research Centre (CISM), Maputo Central Hospital, Maputo, MozambiqueDiscipline of Public Health Medicine, Nelson R Mandela School of Medicine, College of Health Sciences,, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South AfricaMbeya Medical Research Centre (MMRC), National Institute of Medical Research, Mwanza, TanzaniaDepartment of Behavioral Sciences, School of Public Health, Catholic University of Health and Allied Sciences, Mwanza, TanzaniaDepartment of Clinical Research, London School of Hygiene and Tropical Medicine (LSHTM), London, UKBiomedical Research and Training Institute, Harare, Harare Province, ZimbabweMbeya Medical Research Centre (MMRC), National Institute of Medical Research, Mwanza, TanzaniaDepartment of Community Medicine, Gombe State University, Gombe, Gombe, NigeriaBiomedical Research and Training Institute, Harare, Harare Province, ZimbabweDepartment of Pathology, School of Medicine and Oral Health, Kamuzu University of Health Sciences, Blantyre, MalawiDepartment of Community Medicine, Gombe State University, Gombe, Gombe, NigeriaDepartment of gynaecology, University of Zambia, Lusaka, Lusaka Province, ZambiaDepartment of Clinical Medicine, Aalborg University, Aalborg, DenmarkDepartment of gynaecology, University of Zambia, Lusaka, Lusaka Province, ZambiaDepartment of Clinical Medicine, Aalborg University, Aalborg, DenmarkDepartment of Clinical Research, London School of Hygiene and Tropical Medicine (LSHTM), London, UKDiscipline of Public Health Medicine, Nelson R Mandela School of Medicine, College of Health Sciences,, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South AfricaCentre for Clinical Research, North Denmark Regional Hospital, Hjoerring, DenmarkFemale genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haematobium. Both diseases affect the sexual and reproductive health (SRH) of millions of people globally, especially in sub-Sahara Africa (SSA). Awareness and knowledge of these diseases is largely absent among affected communities and healthcare workers in endemic countries. Accurate burden of FGS and MGS disease estimates, single and combined, are absent, mostly due to lack of awareness of both diseases and absence of standardized methods for individual or population-based screening and diagnosis. In addition, there are disparities in country-specific FGS and MGS knowledge, research and implementation approaches, and diagnosis and treatment. There are currently no WHO guidelines to inform practice. The BILGENSA (Genital Bilharzia in Southern Africa) Research Network aimed to create a collaborative multidisciplinary network to advance clinical research of FGS and MGS across Southern African endemic countries. The workshop was held in Lusaka, Zambia over two days in November 2022. Over 150 researchers and stakeholders from different schistosomiasis endemic settings attended. Attendees identified challenges and research priorities around FGS and MGS from their respective countries. Key research themes identified across settings included: 1) To increase the knowledge about the local burden of FGS and MGS; 2) To raise awareness among local communities and healthcare workers; 3) To develop effective and scalable guidelines for disease diagnosis and management; 4) To understand the effect of treatment interventions on disease progression, and 5) To integrate FGS and MGS within other existing sexual and reproductive health (SRH) services. In its first meeting, the BILGENSA Network set forth a common research agenda across S. haematobium endemic countries for the control of FGS and MGS.https://wellcomeopenresearch.org/articles/9-360/v2Female genital schistosomiasis FGS male genital schistosomiasis MGS Schistosoma haematobium researcheng
spellingShingle Oliva Rabozakandria
Russel Stothard
Tendai Munthali
Anouk Gouvras
Paul Kanfwa
Grace Hameja
Helen Ayles
Halwindi Hikabasa
Kwame Shanaube
Rhoda Ndubani
Anna Kildemoes
Olimpia Lamberti
Helen Kelly
Jennifer Fitzpatrick
Pytsje Hoekstra
Seke Kayuni
Bodo Randrianasolo
Amy Sturt
Nkatya Kasese
Augustine Choko
Sibone Mocumbi
Takalani Nemungadi
Elizabeth Ntapara
Anna Samson
Kevin Martin
Elizabeth Danstan
Anifrid Thomson
Ibrahim Rabiu
Chido Dziya Chikwari
David Chaima
Gifty Terkie
Bellington Vwalika
Karoline Joeker
Manuel Kasoka
Peter Leutscher
Amaya L. Bustinduy
Eyrun Kjetland
Louise Thomsen Schmidt Arenholt
The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
Wellcome Open Research
Female genital schistosomiasis
FGS
male genital schistosomiasis
MGS
Schistosoma haematobium
research
eng
title The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
title_full The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
title_fullStr The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
title_full_unstemmed The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
title_short The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa [version 2; peer review: 1 approved, 3 approved with reservations]
title_sort first bilgensa research network workshop in zambia identifying research priorities challenges and needs in genital bilharzia in southern africa version 2 peer review 1 approved 3 approved with reservations
topic Female genital schistosomiasis
FGS
male genital schistosomiasis
MGS
Schistosoma haematobium
research
eng
url https://wellcomeopenresearch.org/articles/9-360/v2
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