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From Data to Discovery Africa's Amyloidosis Research Hub
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amyloidosis africa research

Amyloidosis Africa is committed to advancing high-quality, Africa-led research to improve the understanding, diagnosis, and management of amyloidosis across the continent. Despite major global advances, amyloidosis remains underdiagnosed and underreported in Africa, largely due to limited local data, fragmented research efforts, and restricted access to diagnostic tools.

 

Our research agenda seeks to close these gaps by generating locally relevant evidence, strengthening research capacity, and ensuring African patients and clinicians are represented in global amyloidosis knowledge.

Research

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Why Research Matters in Africa

Amyloidosis presents differently across populations, influenced by genetics, comorbidities, health system structures, and access to care. However, African populations remain significantly underrepresented in amyloidosis research.

 

The absence of African data contributes to:

Delayed diagnosis and misdiagnosis

Limited adaptation of international guidelines to African contexts

Underrecognition of genetic variants relevant to African populations

Inequitable inclusion in global clinical research

Without locally generated evidence, amyloidosis remains invisible within national health priorities and research agendas. Africa-led research is essential to improving patient outcomes and informing policy.

Our Research

Focus Areas

Clinical and Epidemiological Research

We support observational and real-world studies aimed at understanding the prevalence, clinical presentation, and outcomes of amyloidosis in African populations. These studies help define disease patterns and identify opportunities for earlier diagnosis.

Genetic and Molecular Research

Africa has the greatest genetic diversity globally, yet genetic data related to amyloidosis remain limited. We promote research into hereditary ATTR amyloidosis, including population-specific mutations and family screening strategies, to improve diagnosis and counseling.

Cardiac Amyloidosis Research

Given the strong association between amyloidosis and heart failure, we prioritize research focused on cardiac amyloidosis, including ATTR and AL subtypes. This includes studies evaluating diagnostic pathways, imaging strategies, and integration into heart failure services.

Diagnostic Pathways and Quality Improvement Research

We conduct and support research that evaluates real-world diagnostic pathways and identifies system-level barriers to early diagnosis. These studies inform quality improvement initiatives designed to reduce diagnostic delays and improve referral pathways.

Health Systems and Implementation Research

We recognize that improving outcomes requires more than medical knowledge. Our research includes health systems and implementation studies that examine access to diagnostics, workforce capacity, and integration of amyloidosis care within existing services.

Pan-African Research Collaboration

Amyloidosis Africa is building a pan-African research network that brings together clinicians, researchers, institutions, and professional societies across the continent.

Through collaboration, we aim to:

  • Enable multicenter studies and shared protocols

  • Strengthen data quality and comparability

  • Promote African leadership in research design and authorship

  • Facilitate knowledge exchange and mentorship

Collaboration is essential to overcoming fragmented efforts and limited resources.

 

Ethics and Equity in Research

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All research promoted or supported by Amyloidosis Africa adheres to ethical research standards, local regulatory requirements, and principles of equity and inclusion.

We prioritize:

  • Ethical review and participant protection

  • Fair representation of African patients

  • Capacity building for local investigators

  • Equitable partnerships with international collaborators

Our approach ensures that research benefits African communities and strengthens local research ecosystems.

Translating Research Into Impact

 

Research findings must translate into real-world change. Amyloidosis Africa is committed to ensuring that evidence generated through research informs:

  • Medical education and training programs

  • Quality improvement initiatives

  • Clinical guidelines and care pathways

  • Advocacy and policy engagement

By linking research with education, quality improvement, and advocacy, we aim to create sustainable impact across health systems.

Research in Africa: Current Challenges

 

Amyloidosis research in Africa faces several challenges, including:

  • Limited access to diagnostic testing

  • Low awareness among healthcare professionals

  • Scarcity of funding for rare disease research

  • Fragmented data and limited registries

Addressing these challenges requires coordinated, long-term investment in research infrastructure and collaboration.

Our Commitment

Amyloidosis Africa is committed to strengthening African leadership in amyloidosis research, improving data generation, and ensuring that African patients are visible in global research efforts. Through collaboration, capacity building, and ethical research practices, we aim to transform amyloidosis research into better diagnosis, care, and outcomes across Africa.

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