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182 results on '"Nembaware, Victoria"'

2. Advancing intercontinental collaboration in human genetics: success story of the African and European Young Investigator Forum

Author

Alimohamed, Mohamed Zahir, Mnika, Khuthala, Adadey, Samuel Mawuli, Barbosa-Matos, Rita, Avram, Elena, Nevondwe, Patracia, Akurugu, Wisdom A., Mupfururirwa, Wilson, de Miranda Cerqueira, Juliana Xavier, Dore, Rhys, Săbău, Ileana-Delia, Kalantari, Silvia, da Silva, Ana Raquel Gouveia Freitas, Anzaku, Abbas Abel, Matimba, Alice, Chauke, Paballo Abel, Johari, Mridul, Nembaware, Victoria, and Mroczek, Magdalena

Published
2024
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3. Assent, parental consent and reconsent for health research in Africa: thematic analysis of national guidelines and lessons from the SickleInAfrica registry

Author

Munung, Nchangwi Syntia, Nembaware, Victoria, Osei-Tutu, Lawrence, Treadwell, Marsha, Chide, Okocha Emmanuel, Bukini, Daima, Tutuba, Hilda, and Wonkam, Ambroise

Subjects
Philosophy and Religious Studies, Health Sciences, Public Health, Applied Ethics, Pediatric, Pediatric Research Initiative, Good Health and Well Being, Child, Humans, Adolescent, Adult, Parental Consent, Botswana, Nigeria, South Africa, Cameroon, Assent, Parental consent, Reconsent, Disease registries, Minors, SickleInAfrica ELSI WG, Public health, Applied ethics
Abstract

The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age group required to provide written assent; content of assent forms; if separate assent and parental consent forms should be used, consent from emancipated young adults; reconsent at the age of adulthood when a waiver of assent requirements may be appropriate and the conditions for waiving assent requirements. There is however very little available information for researchers and ethics committees on how to navigate these different issues. To provide guidance to research initiatives, the SickleInAfrica consortium conducted a thematic analysis of a sample of research ethics guidelines and procedures in African countries, to identify guidance for assent requirements in health research. The thematic analysis revealed that 12 of 24 African countries specified the age group for which assent is required. The minimum age for written assent varied across the countries. Five countries, Algeria, Botswana, Cameroon, Nigeria and The Democratic Republic of Congo require consent from both parents/family council in certain circumstances. Botswana, Nigeria, South Africa and Uganda have specific assent/consent requirements for research with emancipated minors. South Africa and Algeria requires re-consent at onset of adulthood. Five countries (Botswana, Cameroon, Nigeria, South Africa and Tanzania) specified conditions for waiving assent requirements. The CIOMS and the ICH-GCP guidelines had the most comprehensive information on assent requirements compared to other international guidelines. An interactive map with assent requirements for different African countries is provided. The results show a major gap in national regulations for the inclusion of minors in health research. The SickleInAfrica experience in setting up a multi-country SCD registry in Africa highlights the need for developing and harmonising national and international guidelines on assent and consent requirements for research involving minors. Harmonisation of assent requirements will help facilitate collaborative research across countries.

Published
2022

5. Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

Author

Munung, Nchangwi Syntia, Nembaware, Victoria, de Vries, Jantina, Bukini, Daima, Tluway, Furahini, Treadwell, Marsha, Sangeda, Raphael Zozimus, Mazandu, Gaston, Jonas, Mario, Paintsil, Vivian, Nnodu, Obiageli E, Balandya, Emmanuel, Makani, Julie, and Wonkam, Ambroise

Subjects
Biological Sciences, Genetics, Pain Research, Clinical Research, Sickle Cell Disease, Rare Diseases, Hematology, Africa, ELSI (ethical, SickleInAfrica, and social issues), legal, registries, sickle cell disease, Clinical Sciences, Law
Abstract

Sickle cell disease (SCD) is one of the most prevalent genetic conditions in sub-Saharan Africa. It is a chronic, lifelong disease often characterized by severe pain. However, SCD has received little investment terms of health research, though there is currently a growing pool of SCD data from health and research facilities in different countries. To facilitate research on SCD in Africa, the SickleInAfrica consortium has established a SickleInAfrica registry. The registry will store a systematic collection of longitudinal data from persons with SCD across sub-Saharan Africa, and currently, participants are being enrolled in Ghana, Nigeria, and Tanzania. In establishing this registry, the SickleInAfrica consortium decided to actively identify and anticipate possible ethical issues that may arise in the development and management of the registry. This was motivated, in part, by the near absence of well documented ethical issues for registry research in Africa, more-so for registries enrolling participants across multiple countries and for a genetic condition. The consortium aims to establish standards for the equitable use of data stored in the registry. This paper presents a comprehensive report on the ethical considerations that came up in setting up a genetic disease registry across multiple African countries and how they were addressed by the SickleInAfrica consortium. Major issues included: active involvement of patients in the initiation and management of the registry; questions of assent and re-consent; the importance of ensuring that fears of exploitation are not replicated in African-African research collaborations; and the importance of public engagement in the management of registries. Drawing on this experience, SickleInAfrica plans to set up an ethics helpdesk for genetic disease registries and research in Africa.

Published
2019

6. Exome sequencing of families from Ghana reveals known and candidate hearing impairment genes

Author

Wonkam, Ambroise, Adadey, Samuel Mawuli, Schrauwen, Isabelle, Aboagye, Elvis Twumasi, Wonkam-Tingang, Edmond, Esoh, Kevin, Popel, Kalinka, Manyisa, Noluthando, Jonas, Mario, deKock, Carmen, Nembaware, Victoria, Cornejo Sanchez, Diana M., Bharadwaj, Thashi, Nasir, Abdul, Everard, Jenna L., Kadlubowska, Magda K., Nouel-Saied, Liz M., Acharya, Anushree, Quaye, Osbourne, Amedofu, Geoffrey K., Awandare, Gordon A., and Leal, Suzanne M.

Published
2022
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7. Application of Genomic Medicine in Africa: 14th Conference of the African Society of Human Genetics and the 2nd International Congress of the Moroccan Society of Genomics and Human Genetics, Rabat, Morocco 2022.

Author

Fakhkhari, Meryem, Salih, Ikram, Maazaz, Najwa, Nembaware, Victoria, Munung, Nchangwi Syntia, Matimba, Alice, Chala, Sanaa, Belmouden, Ahmed, Chappell, Karon, Mutesa, Leon, El-Kamah, Ghada, Oumzil, Hicham, Baassi, Larbi, Abbas, Younes, Alimohamed, Mohamed Zahir, Ramsay, Michele, Williams, Scott, Benabdellah, Karim, Idaghdour, Youssef, and Wonkam, Ambroise

Published
2024
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8. Proceedings of a Sickle Cell Disease Ontology workshop — Towards the first comprehensive ontology for Sickle Cell Disease

Author

Mulder, Nicola, Nembaware, Victoria, Adekile, Adekunle, Anie, Kofi A, Inusa, Baba, Brown, Biobele, Campbell, Andrew, Chinenere, Furahini, Chunda-Liyoka, Catherine, Derebail, Vimal K, Geard, Amy, Ghedira, Kais, Hamilton, Carol M, Hanchard, Neil A, Haendel, Melissa, Huggins, Wayne, Ibrahim, Muntaser, Jupp, Simon, Kamga, Karen Kengne, Knight-Madden, Jennifer, Lopez-Sall, Philomène, Mbiyavanga, Mamana, Munube, Deogratias, Nirenberg, Damian, Nnodu, Obiageli, Ofori-Acquah, Solomon Fiifi, Ohene-Frempong, Kwaku, Opap, Kenneth Babu, Panji, Sumir, Park, Miriam, Pule, Gift, Royal, Charmaine, Sangeda, Raphael, Tayo, Bamidele, Treadwell, Marsha, Tshilolo, Léon, and Wonkam, Ambroise

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Pediatric, Orphan Drug, Rare Diseases, Pain Research, Sickle Cell Disease, Hematology, Good Health and Well Being
Abstract

Sickle cell disease (SCD) is a debilitating single gene disorder caused by a single point mutation that results in physical deformation (i.e. sickling) of erythrocytes at reduced oxygen tensions. Up to 75% of SCD in newborns world-wide occurs in sub-Saharan Africa, where neonatal and childhood mortality from sickle cell related complications is high. While SCD research across the globe is tackling the disease on multiple fronts, advances have yet to significantly impact on the health and quality of life of SCD patients, due to lack of coordination of these disparate efforts. Ensuring data across studies is directly comparable through standardization is a necessary step towards realizing this goal. Such a standardization requires the development and implementation of a disease-specific ontology for SCD that is applicable globally. Ontology development is best achieved by bringing together experts in the domain to contribute their knowledge. The SCD community and H3ABioNet members joined forces at a recent SCD Ontology workshop to develop an ontology covering aspects of SCD under the classes: phenotype, diagnostics, therapeutics, quality of life, disease modifiers and disease stage. The aim of the workshop was for participants to contribute their expertise to development of the structure and contents of the SCD ontology. Here we describe the proceedings of the Sickle Cell Disease Ontology Workshop held in Cape Town South Africa in February 2016 and its outcomes. The objective of the workshop was to bring together experts in SCD from around the world to contribute their expertise to the development of various aspects of the SCD ontology.

Published
2016

10. Developing Clinical Phenotype Data Collection Standards for Research in Africa

Author

Zass, Lyndon, primary, Johnston, Katherine, additional, Benkahla, Alia, additional, Chaouch, Melek, additional, Kumuthini, Judit, additional, Radouani, Fouzia, additional, Mwita, Liberata Alexander, additional, Alsayed, Nihad, additional, Allie, Taryn, additional, Sathan, Dassen, additional, Masamu, Upendo, additional, Seuneu Tchamga, Milaine Sergine, additional, Tamuhla, Tsaone, additional, Samtal, Chaimae, additional, Nembaware, Victoria, additional, Gill, Zoe, additional, Ahmed, Samah, additional, Hamdi, Yosr, additional, Fadlelmola, Faisal, additional, Tiffin, Nicki, additional, and Mulder, Nicola, additional

Published
2023
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11. The African Society of Human Genetics successfully launches global data science workshops

Author

Nembaware, Victoria, primary, Bennett, Declan, additional, Chimusa, Emile R., additional, Chikowore, Tinashe, additional, Daodu, Richard, additional, Bitoungui, Valential Ngo, additional, Williams, Scott M., additional, Fatumo, Segun, additional, Healy, Sandra, additional, Seoighe, Cathal, additional, Wonkam, Ambroise, additional, Landouré, Guida, additional, Ndiaye, Rokhaya, additional, Dandara, Collet, additional, Mutesa, Leon, additional, Ramsay, Michele, additional, El-Kamah, Ghada, additional, Sirugo, Giorgio, additional, Makani, Julie, additional, Sadki, Khalid, additional, Alimohamed, Mohamed Zahir, additional, Nkya, Siana, additional, Gaye, Amadou, additional, Ramesar, Raj, additional, Choudhury, Ananyo, additional, Happi, Christian, additional, Munung, Nchangwi Syntia, additional, Kherji, Nadia, additional, Hotchkiss, Jade, additional, Ras, Verena, additional, Ghansay, Anita, additional, Musanabaganwa, Clarisse, additional, Esoh, Kevin Kum, additional, Adadey, Samuel Mawuli, additional, and Coughlan, Simone Christina, additional

Published
2023
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12. Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease

Author

Kandonga, Daniel, primary, Sangeda, Raphael Zozimus, additional, Masamu, Upendo, additional, Kazumali, Eliah, additional, Jonathan, Agnes, additional, Msangawale, Michael, additional, Kaihula, Winfrida, additional, Rwegalulila, Julieth, additional, Ondego, Jesca, additional, Tutuba, Hilda J., additional, Ndunguru, Joyce, additional, Ambrose, Emmanuela E., additional, Kidenya, Benson R., additional, Yonazi, Mbonea, additional, Kyomugisha, Irene, additional, Mupfururirwa, Wilson, additional, Jonas, Mario, additional, Nembaware, Victoria, additional, Mazandu, Gaston Kuzamunu, additional, Kengne, Andre Pascal, additional, Wonkam, Ambroise, additional, Makani, Julie, additional, and Balandya, Emmanuel, additional

Published
2023
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13. The African Society of Human Genetics successfully launches global data science workshops

Author

Landouré, Guida, Ndiaye, Rokhaya, Dandara, Collet, Mutesa, Leon, Ramsay, Michele, El-Kamah, Ghada, Sirugo, Giorgio, Makani, Julie, Sadki, Khalid, Alimohamed, Mohamed Zahir, Nkya, Siana, Gaye, Amadou, Ramesar, Raj, Choudhury, Ananyo, Happi, Christian, Munung, Nchangwi Syntia, Kherji, Nadia, Hotchkiss, Jade, Ras, Verena, Ghansay, Anita, Musanabaganwa, Clarisse, Esoh, Kevin Kum, Adadey, Samuel Mawuli, Coughlan, Simone Christina, Nembaware, Victoria, Bennett, Declan, Chimusa, Emile R., Chikowore, Tinashe, Daodu, Richard, Bitoungui, Valentina Ngo, Williams, Scott M., Fatumo, Segun, Healy, Sandra, Seoighe, Cathal, and Wonkam, Ambroise

Published
2023
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14. Development of multi-level standards of care recommendations for sickle cell disease: Experience from SickleInAfrica

Author

Paintsil, Vivian, primary, Ally, Mwashungi, additional, Isa, Hezekiah, additional, Anie, Kofi A., additional, Mgaya, Josephine, additional, Nkanyemka, Malula, additional, Nembaware, Victoria, additional, Oppong-Mensah, Yaa Gyamfua, additional, Ndobho, Flora, additional, Chirande, Lulu, additional, Makubi, Abel, additional, Nnodu, Obiageli, additional, Wonkam, Ambroise, additional, Makani, Julie, additional, and Ohene-Frempong, Kwaku, additional

Published
2023
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15. Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem

Author

Dyke, Stephanie O. M., primary, Connor, Kathleen, additional, Nembaware, Victoria, additional, Munung, Nchangwi S., additional, Reinold, Kathy, additional, Kerry, Giselle, additional, Mbiyavanga, Mamana, additional, Zass, Lyndon, additional, Moldes, Mauricio, additional, Das, Samir, additional, Davis, John M., additional, De Argila, Jordi Rambla, additional, Spalding, J. Dylan, additional, Evans, Alan C., additional, Mulder, Nicola, additional, and Karamchandani, Jason, additional

Published
2022
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16. Biomarkers of sickle cell nephropathy in Senegal

Author

Ndour, El Hadji Malick, primary, Mnika, Khuthala, additional, Tall, Fatou Guèye, additional, Seck, Moussa, additional, Ly, Indou Dème, additional, Nembaware, Victoria, additional, Mazandu, Gaston Kuzamunu, additional, Sagna Bassène, Hélène Ange Thérèse, additional, Dione, Rokhaya, additional, Ndongo, Aliou Abdoulaye, additional, Diop, Jean Pascal Demba, additional, Barry, Nènè Oumou Kesso, additional, Djité, Moustapha, additional, Ndiaye Diallo, Rokhaya, additional, Guèye, Papa Madièye, additional, Diop, Saliou, additional, Diagne, Ibrahima, additional, Cissé, Aynina, additional, Wonkam, Ambroise, additional, and Lopez Sall, Philomène, additional

Published
2022
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17. Establishing a database for sickle cell disease patient mapping and survival tracking: The sickle pan-african research consortium Nigeria example

Author

Nnodu, Obiageli, primary, Madu, Anazoeze, additional, Chianumba, Reuben, additional, Isa, Hezekiah Alkali, additional, Olanrewaju, Isaac, additional, Osagie, Samuel, additional, Oyekanmi, Nash, additional, Sangeda, Raphael Zozimus, additional, Stewart, Annemie, additional, Nembaware, Victoria, additional, Morrice, Jack, additional, Jonas, Mario, additional, Mazandu, Gaston, additional, Wonkam, Ambroise, additional, and Owolabi, Olumide, additional

Published
2022
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18. The Implementation of Laboratory Information Management System in Multi-Site Genetics Study in Africa: The Challenges and Up-Scaling Opportunities

Author

Oluwole, Oluwafemi Gabriel, primary, Oosterwyk, Chandre, additional, Anderson, Dominique, additional, Adadey, Samuel Mawuli, additional, Mnika, Khuthala, additional, Manyisa, Noluthando, additional, Yalcouye, Abdoulaye, additional, Wonkam, Edmond T., additional, Aboagye, Elvis Twumasi, additional, Dia, Yacouba, additional, Uwibambe, Esther, additional, Jonas, Mario, additional, Priestley, Roy, additional, Popel, Kalinka, additional, Manyashe, Thumeka, additional, de Cock, Carmen, additional, Nembaware, Victoria, additional, and Wonkam, Ambroise, additional

Published
2022
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19. “Black Lives Matter and Black Research Matters”: the African Society of Human Genetics’ call to halt racism in science

Author

Wonkam, Ambroise, primary, Bardien, Soraya, additional, Diallo, Rokhaya Ndiaye, additional, Gaye, Amadou, additional, Alimohamed, Mohamed Zahir, additional, Kya, Siana, additional, Makani, Julie, additional, Landoure, Guida, additional, Mutesa, Leon, additional, El-Kamah, Ghada, additional, Mohamed, Amal, additional, Newport, Melanie, additional, Williams, Scott M., additional, Ramsay, Michele, additional, and Nembaware, Victoria, additional

Published
2022
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21. Effects of Senegal haplotype (Xmn1-rs7412844), alpha-thalassemia (3.7kb HBA1/HBA2 deletion), NPRL3-rs11248850 and BCL11A-rs4671393 variants on sickle cell nephropathy

Author

Ndour, El Hadji Malick, Mnika, Khuthala, Guèye Tall, Fatou, Seck, Moussa, Dème Ly, Indou, Nembaware, Victoria, Sagna-Bassène, Hélène Ange Thérèse, Dione, Rokhaya, Ndongo, Aliou Abdoulaye, Diop, Jean Pascal Demba, Barry, Nènè Oumou Kesso, Djité, Moustapha, Ndiaye Diallo, Rokhaya, Guèye, Papa Madièye, Diop, Saliou, Diagne, Ibrahima, Cissé, Aynina, Wonkam, Ambroise, and Lopez Sall, Philomène

Subjects
Original Article
Abstract

Objective: Sickle cell anemia (SCA) can cause substantial kidney dysfunction resulting in sickle cell nephropathy, which may be affected by the presence of modifier genes. This study evaluates the effects of some modifier genes on sickle cell nephropathy. Methods: Patients living with SCA were recruited. Alpha-thalassemia (3.7kb HBA1/HBA2 deletion) was genotyped using gap PCR multiplex. Senegal haplotype (Xmn1-rs7412844), BCL11A-rs4671393 and NPRL3-rs11248850 were genotyped using Mass Array. The effects of variants on kidney dysfunction were then evaluated using multivariate analysis. Results: The number of patients living with SCA included in this study was 162 with a median age of 20 years [minimum-maximum: 4-57] and a female frequency of 53.21%. Senegal haplotype, BCL11A-rs4671393 variant were protective factors against albuminuria stage A2 with an odds ratio (OR) of 0.22 (95% CI 0.05-0.90) and 0.27 (95% CI 0.08-0.96) respectively. The combination NPRL3-rs11248850 variant - 3.7kb HBA1/HBA2 deletion was a protective factor against albuminuria stage A2 (OR = 0.087, 95% Cl 0.01-0.78) but it was a risk factor for glomerular hyperfiltration (OR = 17.69, 95% CI 1.85-169.31). Conclusions: All four variants displayed a protective effect against albuminuria stage A2. The combination alpha-thalassemia - NPRL3-rs11248850 variant is a risk factor for glomerular hyperfiltration.

Published
2022

23. A View on Genomic Medicine Activities in Africa: Implications for Policy

Author

Jongeneel, C. Victor, primary, Kotze, Maritha J., additional, Bhaw-Luximon, Archana, additional, Fadlelmola, Faisal M., additional, Fakim, Yasmina J., additional, Hamdi, Yosr, additional, Kassim, Samar Kamal, additional, Kumuthini, Judit, additional, Nembaware, Victoria, additional, Radouani, Fouzia, additional, Tiffin, Nicki, additional, and Mulder, Nicola, additional

Published
2022
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24. Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana

Author

Paintsil, Vivian, Amuzu, Evans Xorse, Nyanor, Isaac, Asafo-Adjei, Emmanuel, Mohammed, Abdul Razak, Yawnumah, Suraj Abubakar, Oppong-Mensah, Yaa Gyamfua, Nguah, Samuel Blay, Obeng, Paul, Dogbe, Elliot Eli, Jonas, Mario, Nembaware, Victoria, Mazandu, Gaston, Ohene-Frempong, Kwaku, Wonkam, Ambroise, Makani, Julie, Ansong, Daniel, and Osei-Akoto, Alex

Subjects
Genetics, Molecular Medicine, Genetics (clinical)
Published
2022
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25. Guideline for feedback of individual genetic research findings for genomics research in Africa

Author

Matimba, Alice, Ali, Stuart, Littler, Katherine, Madden, Ebony, Marshall, Patricia, McCurdy, Sheryl, Nembaware, Victoria, Rodriguez, Laura, Seeley, Janet, Tindana, Paulina, Yakubu, Aminu, de Vries, Jantina, and H3Africa Ethics and Community Engagement Working Group

Abstract

As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline for consideration of feeding back individual genetic results of health importance in African research projects. This included a decision flowchart, providing a logical framework to assist in decision-making and planning for human genomics research projects. Although presented in the context of the H3Africa Consortium, we believe the principles described, and the decision flowchart presented here is applicable more broadly in African genomics research.

Published
2022

26. H3Africa PHWG Data Collection Toolkit - Core Phenotypes v2.0

Author

Benkahla, Alia, Johnston, Katherine, Nembaware, Victoria, Kumuthini, Judit, Radouani, Fouzia, Chaouch, Melek, Zass, Lyndon, and Allie, Taryn

Subjects
Health informatics and information systems, Database systems, Data management and data science not elsewhere classified, Data models, storage and indexing, Data quality, Digital curation and preservation
Abstract

Description The H3Africa core phenotypes can be used to collect essential phenotypes related to African health and biomedical research. These phenotypes were prioritised based on the overlap in phenotype data collection across multiple research projects being conducted across the African continent, in various disease fields. Phenotypes include information related to a participant’s demographics, anthropometrics, tobacco and alcohol use, and disease history. Administration The phenotype protocols contained in the toolkit range from Interviewer/Self-administered questionnaires to clinically-administered and bioassay/lab-based assessments. The toolkit is applicable to human participants of all life stages, though some phenotype protocols are age-specific. For more information on administration of the toolkit, see the toolkit guideline. References The toolkit consists of both existing and novel data collection standards, and was based on several existing resources. These resources are listed below: AWI-Gen Collaborative Centre - Cardiometabolic Disease Research Protocols Protocol - Blood Pressure (www.phenxtoolkit.org/protocols/view/40301) Protocol - Cigarette Smoking Status (www.phenxtoolkit.org/protocols/view/30604) Protocol - Tobacco - 30-Day Quantity and Frequency (www.phenxtoolkit.org/protocols/view/30804) Protocol - Alcohol - Lifetime Use (www.phenxtoolkit.org/protocols/view/30101) Protocol - Substances - 30-Day Frequency (www.phenxtoolkit.org/protocols/view/31302) Protocol - Medication Inventory (www.phenxtoolkit.org/protocols/view/140301) Protocol - Personal History of Type I and Type II Diabetes (www.phenxtoolkit.org/protocols/view/140501) Protocol - Personal History of Kidney Failure (www.phenxtoolkit.org/protocols/view/140601) Protocol - Arrhythmia (www.phenxtoolkit.org/protocols/view/41101) Protocol - Rheumatic Fever/Rheumatic Heart Disease (www.phenxtoolkit.org/protocols/view/41401) Protocol - History of Stroke (www.phenxtoolkit.org/protocols/view/130301)

Published
2022
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27. Update on SickleInAfrica: a collaborative and multidimensional approach to conduct research and improve health

Author

Nkya, Siana, Masamu, Upendo, Kuona, Patience, Kiguli, Sarah, Guindo, Aldiouma, Sarfo, Fred Stephen, Nnodu, Obiageli, Wonkam, Ambroise, Balandya, Emmanuel, Makani, Julie, Bruno, Mmbando, Bukini, Daima, Mgaya, Josephine, Manongi, Janeth, Maro, Jason, Paul, Stella, Ondego, Jesca, Shabani, Sawabati, Hokororo, Justin, Makundi, Frank, Sangeda, Raphael Zozimus, Jonathan, Agnes, Minja, Irene Kida, Bodzo, Paidamoyo, Amuzu, Evans, Paintsil, Vivian, Ansong, Daniel, Kene, Sekou, Keita, Ibrahima, Toure, Boubacari A, Sarro, Yeya dit Sadio, Ackerman, Hans, Ruhl, Parker, Idriss, Abdoul Malik, Hassan, Abdul Aziz, Madu, Anazoeze, Brown, Bioebele, Okocha, Emmanuel, Peprah, Emmanuel, Oyekanmi, Nash, Isa, Hezekiah, Nwegbu, Maxwell, Asala, Samuel, Kandonga, Daniel, Ambrose, Emmanuela, Urio, Florence, Mutagonda, Ritah, Chirande, Lulu, Ruggajo, Paschal, Mupere, Ezekiel, Ssemitala, Fred, Jjingo, Daudi, Opoka, Robert, Munube, Deogratious, Namazzi, Ruth, Joloba, Moses, Ndeezi, Grace, Phiri, Cynthia, Mtisi, Takudzwa, Masimirembwa, Collen, Mantina, Hamakwa, Ruredzo, Ian Machingura, Gorejena, Pamela, Sambo, Pauline, Kandawasvika, Gwendoline Q., Liyoka, Catherine Chunda, Akoto, Alex Osei, Ofori-Aquah, Solomon, Mulder, Nicola, Nembaware, Victoria, Jonas, Mario, Hotchkiss, Jade, Pascal, Andre, Munung, Syntia, Mupfururirwa, Wilson, Mnika, Khuthala, Bitoungi, Valentina Ngo, Ohene-Frempong, Kwaku, Tshilolo, Leon, and Olopade, Fumni

Published
2024
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28. Competency-based Training Needs Assessment for Research Managers and Administrators in Africa and the United Kingdom to Strengthen Equitable Partnerships

Author

Nembaware, Victoria, primary, Glasser, Simon, additional, Priest, Anne, additional, Davies, Ailsa, additional, Skelton, Michelle, additional, Bodzo, Paidamoyo, additional, Lelong, Olivia, additional, Naidu, Alecia, additional, Masimirembwa, Colleen, additional, Mutambiranwa, Alice, additional, Hay, Annette, additional, Wonkam, Ambroise, additional, and Dandara, Collet, additional

Published
2022
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29. Determination of microglucosuria v1

Author

Hadji Malick Ndour, El, primary, Mnika, Khuthala, additional, Gueye Tall, Fatou, additional, Seck, Moussa, additional, Deme Ly, Indou, additional, Nembaware, Victoria, additional, Kuzamunu Mazandu, Gaston, additional, Ange Therese Sagna-Bassene, Helene, additional, Dione, Rokhaya, additional, Abdoulaye Ndongo, Aliou, additional, Pascal Demba Diop, Jean, additional, Oumou Kesso Barry, Nene, additional, Djite, Moustapha, additional, Ndiaye Diallo, Rokhaya, additional, Madieye Gueye, Papa, additional, Diop, Saliou, additional, Diagne, Ibrahima, additional, Cisse, Aynina, additional, Wonkam, Ambroise, additional, and Lopez Sall, Philomene, additional

Published
2022
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31. Détermination du débit de filtration glomérulaire au cours de la drépanocytose au Sénégal: Schwartz, Cockcroft et Gault, MDRD, CKD-EPI ou JSCCS ?

Author

Djite, Moustapha, primary, Sall, Philomène Lopez, additional, Wonkam, Ambroise, additional, Cisse, Aynina, additional, Diagne, Ibrahima, additional, Diop, Saliou, additional, Gueye, Papa Madièye, additional, Diallo, Rokhaya Ndiaye, additional, Aidara, Souleymane, additional, Mara, Sokhna, additional, Keita, Younoussa, additional, Toure, Aïssatou, additional, Ndour, El Hadji Malick, additional, Barry, Nènè Oumou kesso, additional, Diop, Jean Pascal Demba, additional, Ndongo, Aliou Abdoulaye, additional, Sagna-Bassene, Hélène Ange Thérèse, additional, Nembaware, Victoria, additional, Ly, Indou Dème, additional, Seck, Moussa, additional, Mnika, Khuthala, additional, Mazandu, Gaston Kuzamunu, additional, Tall, Fatou Guèye, additional, and Dione, Rokhaya, additional

Published
2022
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33. Guideline for feedback of individual genetic research findings for genomics research in Africa

Author

Matimba, Alice, primary, Ali, Stuart, additional, Littler, Katherine, additional, Madden, Ebony, additional, Marshall, Patricia, additional, McCurdy, Sheryl, additional, Nembaware, Victoria, additional, Rodriguez, Laura, additional, Seeley, Janet, additional, Tindana, Paulina, additional, Yakubu, Aminu, additional, and de Vries, Jantina, additional

Published
2022
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37. SmartLife Infographic

Author

Nembaware, Victoria and Glasser, Simon

Abstract

Comparative analyses of responses from Research Administrators and Managers located in the UK and Africa to identify key issues that could inform training particularly impact equitable partnerships.

Published
2021
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39. Investigations of Kidney Dysfunction-Related Gene Variants in Sickle Cell Disease Patients in Cameroon (Sub-Saharan Africa)

Author

Ngo-Bitoungui, Valentina J., primary, Belinga, Suzanne, additional, Mnika, Khuthala, additional, Masekoameng, Tshepiso, additional, Nembaware, Victoria, additional, Essomba, René G., additional, Ngo-Sack, Francoise, additional, Awandare, Gordon, additional, Mazandu, Gaston K., additional, and Wonkam, Ambroise, additional

Published
2021
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40. Global Haematology: SickleInAfrica

Author

Makani, Julie, Sangeda, Raphael Z, Nnodu, Obiageli, Nembaware, Victoria, Osei-Akoto, Alex, Paintsil, Vivian, Balandya, Emmanuel, Kent, Jill, Luzzatto, Lucio, Ofori-Acquah, Solomon, Olopade, Olofunmi I, Pallangyo, Kisali, Minja, Irene K, Jonas, Mario, Mazandu, Gaston K, Mulder, Nicola, Ohene-Frempong, Kwaku, and Wonkam, Ambroise

Subjects
Africa, Humans, Public Health Surveillance, Anemia, Sickle Cell, Regional Medical Programs, Article
Published
2020

42. Sickle Cell Disease Ontology: recent development and expansion of the universal sickle cell knowledge representation.

Author

Mazandu, Gaston K, Hotchkiss, Jade, Nembaware, Victoria, Wonkam, Ambroise, and Mulder, Nicola

Subjects
SICKLE cell anemia, KNOWLEDGE representation (Information theory), SCIENTIFIC literature, ONTOLOGY, DATA harmonization, MEDICAL informatics, ONTOLOGIES (Information retrieval)
Abstract

The Sickle Cell Disease (SCD) Ontology (SCDO, https://scdontology.h3abionet.org/) provides a comprehensive knowledge base of SCD management, systems and standardized human and machine-readable resources that unambiguously describe terminology and concepts about SCD for researchers, patients and clinicians. The SCDO was launched in 2016 and is continuously updated in quantity, as well as in quality, to effectively support the curation of SCD research, patient databasing and clinical informatics applications. SCD knowledge from the scientific literature is used to update existing SCDO terms and create new terms where necessary. Here, we report major updates to the SCDO, from December 2019 until April 2021, for promoting interoperability and facilitating SCD data harmonization, sharing and integration across different studies and for retrospective multi-site research collaborations. SCDO developers continue to collaborate with the SCD community, clinicians and researchers to improve specific ontology areas and expand standardized descriptions to conditions influencing SCD phenotypic expressions and clinical manifestations of the sickling process, e.g. thalassemias. Database URL : https://scdontology.h3abionet.org/ [ABSTRACT FROM AUTHOR]

Published
2022
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44. SickleInAfrica

Author

Makani, Julie, primary, Sangeda, Raphael Z, additional, Nnodu, Obiageli, additional, Nembaware, Victoria, additional, Osei-Akoto, Alex, additional, Paintsil, Vivian, additional, Balandya, Emmanuel, additional, Kent, Jill, additional, Luzzatto, Lucio, additional, Ofori-Acquah, Solomon, additional, Olopade, Olofunmi I, additional, Pallangyo, Kisali, additional, Minja, Irene K, additional, Jonas, Mario, additional, Mazandu, Gaston K, additional, Mulder, Nicola, additional, Ohene-Frempong, Kwaku, additional, and Wonkam, Ambroise, additional

Published
2020
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45. Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

Author

Munung, Nchangwi Syntia, primary, Nembaware, Victoria, additional, de Vries, Jantina, additional, Bukini, Daima, additional, Tluway, Furahini, additional, Treadwell, Marsha, additional, Sangeda, Raphael Zozimus, additional, Mazandu, Gaston, additional, Jonas, Mario, additional, Paintsil, Vivian, additional, Nnodu, Obiageli E., additional, Balandya, Emmanuel, additional, Makani, Julie, additional, and Wonkam, Ambroise, additional

Published
2019
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46. Advancing intercontinental collaboration in human genetics: success story of the African and European Young Investigator Forum

Author

Alimohamed, Mohamed Zahir, Mnika, Khuthala, Adadey, Samuel Mawuli, Barbosa-Matos, Rita, Avram, Elena, Nevondwe, Patracia, Akurugu, Wisdom A., Mupfururirwa, Wilson, de Miranda Cerqueira, Juliana Xavier, Dore, Rhys, Săbău, Ileana-Delia, Kalantari, Silvia, da Silva, Ana Raquel Gouveia Freitas, Anzaku, Abbas Abel, Matimba, Alice, Chauke, Paballo Abel, Johari, Mridul, Nembaware, Victoria, and Mroczek, Magdalena

Published
2023
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48. IHP-PING—generating integrated human protein–protein interaction networks on-the-fly.

Author

Mazandu, Gaston K, Hooper, Christopher, Opap, Kenneth, Makinde, Funmilayo, Nembaware, Victoria, Thomford, Nicholas E, Chimusa, Emile R, Wonkam, Ambroise, and Mulder, Nicola J

Subjects
SOCIAL interaction, NUCLEOTIDE sequencing, FLEXIBLE packaging, PROTEIN-protein interactions, ONLINE databases, BIG data, PYTHON programming language, INTERNET stores
Abstract

Advances in high-throughput sequencing technologies have resulted in an exponential growth of publicly accessible biological datasets. In the 'big data' driven 'post-genomic' context, much work is being done to explore human protein–protein interactions (PPIs) for a systems level based analysis to uncover useful signals and gain more insights to advance current knowledge and answer specific biological and health questions. These PPIs are experimentally or computationally predicted, stored in different online databases and some of PPI resources are updated regularly. As with many biological datasets, such regular updates continuously render older PPI datasets potentially outdated. Moreover, while many of these interactions are shared between these online resources, each resource includes its own identified PPIs and none of these databases exhaustively contains all existing human PPI maps. In this context, it is essential to enable the integration of or combining interaction datasets from different resources, to generate a PPI map with increased coverage and confidence. To allow researchers to produce an integrated human PPI datasets in real-time, we introduce the integrated human protein–protein interaction network generator (IHP-PING) tool. IHP-PING is a flexible python package which generates a human PPI network from freely available online resources. This tool extracts and integrates heterogeneous PPI datasets to generate a unified PPI network, which is stored locally for further applications. [ABSTRACT FROM AUTHOR]

Published
2021
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49. Utilization of Pneumococcal Vaccine and Penicillin Prophylaxis in Sickle Cell Disease in Three African Countries: Assessment among Healthcare Providers in SickleInAfrica.

Author

Brown, Biobele J., Madu, Anazoeze, Sangeda, Raphael Z., Nkya, Siana, Peprah, Emmanuel, Paintsil, Vivian, Mmbando, Bruno P., Gyamfi, Joyce, Okocha, Chide E., Asala, Samuel A., Nembaware, Victoria, Jonas, Mario, Kengne, Andre P., Chimusa, Emile R., Nguweneza, Arthemon, Isa, Hezekiah A., Nnebe-Agumadu, Uche, Adekile, Adekunle D., Osei-Akoto, Alex, and Ohene-Frempong, Kwaku

Subjects
SICKLE cell anemia, MEDICAL personnel, PNEUMOCOCCAL vaccines, PENICILLIN, STREPTOCOCCUS pneumoniae
Abstract

Sickle cell disease is a genetic disease with a predisposition to infections caused by encapsulated organisms, especially Streptococcus pneumoniae. Pneumococcal vaccines and prophylactic penicillin have reduced the rate of this infection and mortality in sickle cell disease. However, implementation of these interventions is limited in Africa. The objectives of the study were to assess health care providers' behaviors with the implementation of pneumococcal vaccination and penicillin prophylaxis and to identify barriers to their use. A 25-item online questionnaire was administered through SickleinAfrica: a network of researchers, and healthcare providers, in Ghana, Nigeria, and Tanzania, working to improve health outcomes of sickle cell disease in Africa. Data was collected and managed using the Research Electronic Data Capture (REDCap), tools and data analysis was done using STATA version 13 and R statistical software. Eighty-two medical practitioners responded to the questionnaire. Only 54.0 and 48.7% of respondents indicated the availability of published guidelines on sickle cell disease management and pneumococcal vaccine use, respectively, at their facilities. The majority (54.0%) perceived that the vaccines are effective but over 20.0% were uncertain of their usefulness. All respondents from Ghana and Tanzania affirmed the availability of guidelines for penicillin prophylaxis in contrast to 44.1% in Nigeria. Eighty-five percent of respondents affirmed the need for penicillin prophylaxis but 15.0% had a contrary opinion for reasons including the rarity of isolation of Streptococcus pneumoniae in African studies, and therefore, the uncertainty of its benefit. Lack of published guidelines on the management of sickle cell disease and doubts about the necessity of prophylactic measures are potential barriers to the implementation of effective interventions. [ABSTRACT FROM AUTHOR]

Published
2021
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