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SickleInAfrica Working Groups

Several Working Groups (WG) exist that focus on the relevant areas specific to Sickle Cell Disease. The tabs below highlight the work and outcomes for these Working Groups.

Data Management

The Data Management Working Group aims to facilitate capturing and depositing of data from research participants into a centralized secure database. Data will be standardized and will be easy transform for analyses and for use in collaborative research. 


Deliverables:

  • Working Group Meets Monthly
  • System Architecture is approved by SC
  • RedCap Is Functional at all SPARCO sites
  • SPARCO Research Data Elements 
  • SCD Standardized REDCap Data Elements are available publicly in REDCaP and SADaCC website
  • Tracking of Recruitment at sites
  • SOPs for data collection, management, security and sharing are approved by SC and accessible via the SADaCC website
  • Site Visits Are Conducted by SADaCC & SPARCO Hub
  • Data Quality and Assurance system is functional
  • Technical HelpDesk for the sites is functional
  • A centralized mySQL hemoglobinopathy database is live on the Sickle In Africa website

Progress to date:

  • Draft Standardized data dictionary
  • Comparison of existing data elements from SPARCO sites and PhenX
  • Draft System Architecture
  • REDCap database and data capturing

Chair: Prof. Raphael Sangeda

Members: Prof. Ambroise Wonkam, Dr. Victoria Nembaware, Prof. Nicola Mulder, Ms. Annemie Stewart, Mr. Wilson Mupfururirwa, Ms. Irene Kyomugisha, Mr. Mario Jonas, Dr. Jack Morrice, Prof. Julie Makani, Dr. Irene Minja, Prof. Raphael Sangeda, Upendo Masamu, Dr. David Nana Adjei, Mr. Isaac Nyanor, Prof. Obiageli Nnodu, Mr. Reuben Chianumba, Mr. Olumide Owolabi, Dr. Ibrahima Keita, Mr. Moussa Coulibaly, Mr. Daniel Kandonga, Mr. Michael Msangawale, Dr. Agnes Jonathan, Dr. Daudi Jjingo, Mile Nsubuga, Takudzwa Mtisi, Dr. Francis Simusika

Mailing list: sparco_database_research_at_lists.uct.ac.za

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Research

The Research working group aims to coordinate development of research proposals and ethical research procedures within SPARCO and SADaCC. 
 
Deliverables:

  • Working group meets monthly
  • Ethical, legal and social issues (ELSI) guidelines and templates approved by Steering Committee
  • Retrospective data analyses report
  • Approved Ethics Certificates and Data Sharing Plans 
  • Research Studies - Plans
  • Publications of pilot studies and comparative studies

Progress: 

  • Ethics and Consenting Guidelines & Templates. 
  • Draft of the retrospective research proposal 

Chair: Prof. Julie Makani

Members: Prof. Ambroise Wonkam, Prof. Nicola Mulder, Andre Pascal, Dr. Victoria Nembaware, Dr. Jack Morrice, Dr. Khuthala Mnika, Valentina Bitongui, Mr. Mario Jonas, Prof. Julie Makani, Dr. Irene Minja, Ms. Malula Nkanyemka, Dr. Siana Nkaya, Ms. Daima Bukini, Upendo Masamu, Prof. Fred Stephen Sarfo, Prof. Solomon Ofori-Acquah, Dr Samuel Blay Nguah, Prof. Obiageli Nnodu, Dr. Emmanuel Peprah, Dr Echezona Ezeanolue, Prof. Aldiouma Guindo, Yeya dit Sadio Sarro, Dr. Paschal Ruggajo, Dr. Agnes Jonathan, Prof Grace Ndeezi, Dr. Ruth Namazzi, Prof Robert Opoka, Prof. Collen Masimirembwa, Dr. Catherine Chunda-Liyoka, Prof. Uma Athale

Mailing list: sparco_database_research_at_lists.uct.ac.za

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SCD Ontology

The Sickle Cell Disease Ontology (SCDO) project is a collaboration between H3ABioNet (Pan African Bioinformatics Network), SPAN, SADaCC and SPARCO. The SCDO is currently under development (click here to view a draft)and its purpose is to:
establish community standardized SCD terms and descriptions establish canonical and hierarchical representation of knowledge on SCD links to other ontologies and bodies of work such as DO, PhenX MeSH, ICD, NCI’s thesaurus, SNOMED and OMIM.
Once complete, we anticipate that the ontology will:

  • be the most comprehensive collection of knowledge in the SCD
  • facilitate exploration of new scientific questions and ideas.
  • facilitate seamless data sharing and collaborations including meta-analysis within the SDC community.
  • support the building of databasing and clinical informatics in SCD

 Deliverables

  • SCDO Version 1 Content is Finalized 
  • The SCDO Ontology comply to OBO rules
  • Monthly SCDO Meetings are conducted
  • Curation pipeline is available for download
  • Web-portal content is live
  • SCDO Workshop Agenda & Report
  • Cross-consortia research and publications

Progress: 

Read details from the SCDO website
 
Chairs: Professor Nicola Mulder and Professor Ambroise Wonkam
Read details from the SCDO website
 

Skills Development

This working aims to coordinate training and skills development across SPARCO and SADaCC for the members of the consortium as well as SPAN.

Deliverables:

  • Working group meets monthly
  • External training opportunities are available on the Sickle In Africa/SADaCC website
  • List of training priorities is loaded onto SADaCC website
  • Database of existing training opportunities to collaborate with
  • New training curricula are designed and implemented
  • Professional development training is conducted
  • Public engagement reports are made publicly available
  • Webinars are conducted monthly

Progress to date:

  • List of training priorities
  • Introduction to Data Management Training Curriculum
  • Introduction to Data Management Workshop Plan
  • Medical Genetics and Genetic Counselling Training Plan

Chair: Prof. Obiageli Nnodu

Members: Prof. Ambroise Wonkam, Prof. Nicola Mulder, Dr. Victoria Nembaware, Dr. Jack Morrice, Ms. Paidamoyo Bodzo, Prof. Julie Makani, Dr. Irene Minja, Ms. Josephine Mgaya, Dr Amma Benneh-Akwasi Kuma, Prof Alex Osei-Akoto, Prof. Obiageli Nnodu, Dr. Maxwell Nwegbu, Dr. Olugbenga Ofakunri, Prof. Aldiouma Guindo, Yeya dit Sadio Sarro, Dr. Irene Kida Minja, Dr. Agnes Jonathan, Dr Ruth Namazzi, Dr D. Munube, Dr. Patience Kuona, Jombo Namushi

Mailing list: sparco_skills_standards_at_lists.uct.ac.za

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Standards of Care

The Standards of Care Working Group was established to develop new standards of care guidelines for sickle cell disease by adapting existing guidelines. 
 
Deliverables:

  • Working group meets monthly
  • Database of SCD management guidelines
  • SCDO Ontology Updated
  • Review Methods are in Place
  • Common Guidelines for Management of SSA is approved by SC
  • Minimum standards for Management of SSA is approved by SC
  • mHealth standards of care tool is in place
  • Evaluation Report of the mHealth pilot is published
  • IRB Approvals are in place
  • Evaluation Report of the mHealth pilot is published
  • Minimum standards of Guidelines are made available via the internet
  • Signed MOUs with the Ministries of Health
  • SPAN sites adopting Guidelines 
  • Online Portal to track changes

Progress: 

  • Ongoing comparative analyses of existing guidelines 

Chair: Professor Kwaku Ohene-Frempong

Members: Prof. Ambroise Wonkam, Dr. Kambe Banda, Jade Hotchkiss, Dr. Victoria Nembaware, Mr. Wilson Mupfururirwa, Prof. Julie Makani, Dr. Irene Minja, Ms. Josephine Mgaya, Dr. Vivian Paintsil, Dr Eunice Agyeman Ahmed, Prof. Obiageli Nnodu, Hezekiah Isa, Prof. Uche Nnebe Agumadu, Boubacari Ali Toure, Dr. Mariam Kanta, Sekou Kene, Dr. Mwashungi Ally, Dr. Agnes Jonathan, Dr. Ruth Namazzi, Dr D. Munube, Prof. Heather Hume, Dr. Pamela Gorejena-Chidawanyika, Dr. Catherine Chunda-Liyoka

Mailing list: sparco_skills_standards_at_lists.uct.ac.za

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