PAFLAR Research Pillar
1. PAFLAR Research Strategy
PAFLAR has taken on the task of leading the way and laying the groundwork for deriving maximum benefit from emerging technologies and human skills to empower children with rheumatic diseases. Research is one of main pillars of the missions and visions of our strategic plan. objectives for research pillar are
- To improve the quality of life of children with pediatric rheumatic diseases through evidence based practice
- To build international collaboration: gain new perspective on research and build relationships with others in the field
- Increase research in pediatric rheumatology in Africa.
2. PAFLAR Research Group
A call for action to constitute a research group was launched during PAFLAR first congress held virtually in 28-30 July 2021. PAFLAR research group was established and our first meeting held in November 25th 2021. Ground rules and terms of references for the PAFLAR Research Working Group were agreed upon.
Our Research goals are;
- Provide strategic leadership, direction, and inputs to better inform the registry development process.
- Define a framework/Protocol for implementation of the registry activities; including a set of targets that will enhance the optimal uptake of the registry.
- Implement the strategic areas of the registry.
- Generate knowledge that will inform strategies that will ensure equitable access to quality health for paediatric rheumatology patients.
- Provide timely feedback to the PAFLAR Board as per timelines.
- Provide critical analysis of bottlenecks to implementation and identify innovative strategic and tailored approaches.
- Provide guidance on changing technical landscape and emerging issues that could potentially become priorities and strategize on these.
- Identify the evaluation matrix of the registry.
- Resource mobilization to support the registry.
- Harness the collective expertise, resources and capability across the globe to execute the tasks outlined as and when necessary.
- Ensure respect for ethical rules and scientific good practice recommendations in the data collection and their use in order to generate reliable data acceptable to the world scientific community.
- Ensure an optimal and equitable use by the researchers of the data generated by the registry where the only parameters to be taken into consideration to decide between the proposals are the relevance, the scientific quality and the rigor in the work.
Four subcommittees were created:
- Scientific committee with a mission of reviewing and translating protocols proposed by members, deliberation on the pertinence and feasibility of proposed projects and approval of the research projects.
- Ethics committee with a mission of drafting a set criteria of ethics to apply to various pertinent institutional documents ensuring the quality of proposed documents to the institutional ethical committee and collection of ethical approval of involved institution before commencement of research projects.
- Investigation coordination committee with a mission of ensuring adequate training for investigators, supervision of the quality of data collection, responding to the different queries from investigators concerning the research protocol and implementation.
- Data management and manuscripts committee with a mission of designing the data collection sheet with translation to French, English and other language. Statistical analysis and follow-up of the drafting of manuscripts and publication process.
3. PAFLAR Research Projects
Our first project is the establishment of a juvenile idiopathic arthritis (JIA) registry, which is one of our key initiatives to achieve the PAFLAR Research Pillar goals. The PAFLAR Registry offers a unique opportunity to pioneer and spearhead a systematic and organized format for collecting clinically relevant information that will offer insight into current clinical scenarios and provide a platform to conduct research.
Registry Objectives
Establishing a pediatric rheumatology registry for JIA will ultimately facilitate describing the natural history and clinical characteristics of JIA among patients in Africa.
- Primary Objective: Determine baseline patient characteristics and clinical features of patients with JIA assessed across Africa.
- Secondary Objective: Assess the clinical effectiveness and safety of various therapeutic interventions through long-term patient follow-up.
Dr. Angela Migowa
President of PAFLAR
Nairobi-KENYA
Dr. Wafa Hamdi
Chair, PAFLAR Research Committee
Tunis-TUNISIA
Research Articles
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Background: Pediatric Rheumatology is an orphan specialty in Africa which is gradually gaining importance across the continent. This commentary discusses the current state of affairs and offers practical strategies to navigate the challenges encountered in research, models of care, and training.
Main body: This commentary discusses the current state of affairs in the sphere of Pediatric Rheumatology across Africa and offers practical strategies to navigate the challenges encountered in research, models of care, education and training. We outline the establishment, opportunities of growth and achievements of the Pediatric Society of the African League Against Rheumatism (PAFLAR).
Conclusion: This commentary lays the foundation for establishment of a formidable framework and development of partnerships for the prosperity of Pediatric Rheumatology in Africa and beyond.
Authors: Angela N. Migowa, Djohra Hadef, Wafa Hamdi, Oscar Mwizerwa, Madeleine Ngandeu, Yassmin Taha, Faleye Ayodele, Kate Webb and Christiaan Scott.
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Objective: To develop recommendations for the management of rheumatic and musculoskeletal diseases (RMDs) during the COVID-19 pandemic.
Method: A task force comprising of 25 rheumatologists from the 5 regions of the continent was formed and operated through a huband- spoke model with a central working committee (CWC) and 4 subgroups. The subgroups championed separate scopes of the clinical questions and formulated preliminary statements of recommendations which were processed centrally in the CWC. The CWC and each subgroup met by several virtual meetings, and two rounds of voting were conducted on the drafted statements of recommendations. Votes were online-delivered and recommendations were pruned down according to predefined criteria. Each statement was rated between 1 and 9 with 1–3, 4–6 and 7–9 representing disagreement, uncertainty and agreement, respectively. The levels of agreement on the statements were stratified as low, moderate or high according to the spread of votes.A statement was retired if it had a mean vote below 7 or a ‘low’ level of agreement.
Background: Pediatric Rheumatology is an orphan specialty in Africa which is gradually gaining importance across the continent. This commentary discusses the current state of affairs and offers practical strategies to navigate the challenges encountered in research, models of care, and training.
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Authors: Richard Oluyinka Akintayo, Rachid Bahiri, Yasser El Miedany, Hakeem Olaosebikan, Asgar Ali Kalla, Adewale Olukayode Adebajo, Angela Nyangore Migowa, Samy Slimani, Ouma Devi Koussougbo, Ben Abdelghani Kawther, Akpabio Akanimo Akpabio, Imad Ghozlani, Dzifa Dey, Waleed A. Hassan, Nimmisha Govind, Kavita Makan, Abdelgaffar Mohamed, Eugene Kalman Genga, Mohamed Khattry Ahmed Ghassem, Mohamed Mortada, Wafa Hamdi, Moudjib O. Wabi, Mohammed Tikly, Madeleine Ngandeu-Singwe, Christian Scott
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Abstract: This chapter describes the musculoskeletal (MSK) context in children and young people as an important contributor to the global non-communicable disease burden. Through selected MSK conditions, we describe the impact on patients, families and communities and highlight the challenges that need to be addressed. We focus on opportunities for better working together and describe exemplar initiatives to raise awareness, workforce capacity building, models of care and research agendas to have a greater global context.
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Authors: Helen E. Foster, Christiaan Scott, Carl J. Tiderius, Matthew B. Dobbs, Elizabeth Ang, Sirirat Charuvanij, Wendy Costello, Marja Kinnunen, Laura B. Lewandowski, Angela Migowa, Simon R. Stones, Soamarat Vilaiyuk, Kate Webb
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Abstract: The onset of the COVID-19 pandemic has led to far-reaching changes in the delivery of healthcare services across Africa. A number of drugs used in the management of rheumatic diseases have been touted to have roles to play in the treatment and/or exacerbation of COVID-19 symptoms and this has resulted in significant changes in the practice of rheumatology. The global rheumatology community has risen to this challenge by demonstrating collaborative partnership, resulting in the establishment of the global rheumatology registry to collect data on rheumatic patients infected with COVID-19.
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Authors: Richard Oluyinka Akintayo, Akpabio Akpabio, Asgar Kalla, Dzifa Dey, Angela Migowa, Hakeem Olaosebikan, Rachid Bahiri, Yasser El Miedany, Djohra Hadef, Wafa Hamdi, Omondi Oyoo, Samy Slimani, Abubakar Yerima, Yassmin Taha, Adewale Adebajo, Olufemi Adelowo, Mohammed Tikly, Imad Ghozlani, Kawther Ben Abdelghani, Nermeen Ahmed Fouad, Doaa Mosad, Dalia El Mikkawy, Mohamed Hassan Abu-Zaid, Rasha A Abdel-Magied.
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