Our Working Groups

The Registry Working Group is responsible for the design, development, implementation, and management of national and collaborative registries and data systems relating to Inborn Errors of Immunity and Primary Immunodeficiency Disorders (PID/IEI). This group establishes data governance frameworks, ensures compliance with applicable ethical, confidentiality, and data-protection standards, and promotes the secure collection of high-quality clinical and demographic data. The group works closely with the Research Working Group, clinical sites, and international registry networks to enable accurate epidemiological tracking, facilitate quality improvement initiatives, support research, and inform policy and resource allocation decisions. The Registry Working Group also works closely with the **Data Access and Governance Committee** to ensure stewardship of all generated data, develops data-sharing protocols, trains healthcare professionals on data entry and quality assurance, and ensures that registry outputs meaningfully contribute to improved patient identification, diagnosis, and outcomes.

The Clinical Working Group focuses on facilitating and supporting the identification, diagnosis, and clinical management of children and adults living with Primary Immunodeficiency Disorders and Inborn Errors of Immunity (PID/IEI). This group develops and disseminates evidence-based clinical guidelines, promotes best practices for diagnosis and management, strengthens the capacity of healthcare professionals through mentorship and training, and supports the establishment of national diagnostic pathways. The group works collaboratively with hospitals, laboratories, and clinical institutions to improve patient outcomes and reduce diagnostic delays.

The Educational Working Group is responsible for developing and implementing educational initiatives targeting healthcare professionals, patients, families, and the general public. This includes creating continuing medical education (CME) programs for clinicians and scientists, developing patient-friendly educational materials, organizing awareness campaigns, and facilitating scientific exchange. The group ensures that accurate, accessible, and culturally appropriate information about PID/IEI reaches all relevant stakeholders, empowering both providers and patients with knowledge.

The Advocacy Working Group promotes the meaningful engagement of patients, caregivers, and families in the design, implementation, and evaluation of all PIDNET-KENYA activities and initiatives. This group works to raise public awareness, advocate for improved access to diagnosis and treatment, reduce stigma associated with PID/IEI, and ensure that patient and family perspectives are integrated into policy discussions, clinical care decisions, and research priorities. The group serves as a bridge between the lived experiences of patients and the strategic work of the Network.

The Treatments Working Group focuses on therapeutic interventions, including immunoglobulin therapy, antimicrobial prophylaxis, hematopoietic stem cell transplantation, and emerging treatments for PID/IEI. This group works to develop treatment guidelines, advocate for improved access to essential medicines and therapies, support healthcare facilities in establishing treatment protocols, and document treatment outcomes. The group collaborates with the Ministry of Health, pharmaceutical partners, and international treatment networks to expand therapeutic options available to Kenyan patients.

The Research Working Group promotes, coordinates, and supports scientific and clinical research relating to PID/IEI, including collaborative, multi-institutional, and multidisciplinary research initiatives. This group is responsible for establishing and maintaining national registries and data systems for PID/IEI, subject to applicable ethical, confidentiality, and data-protection standards. The group fosters partnerships with universities, research institutions, and international collaborators, ensures ethical oversight of research activities, and promotes the translation of research findings into clinical practice and policy.

The Policy Working Group engages with government entities, regulatory bodies, and legislative processes to advance policies that support the identification, diagnosis, management, and care of persons with PID/IEI. This group develops policy briefs, position statements, and recommendations informed by evidence and stakeholder input. The group works to ensure that PID/IEI is recognized within national health priorities, that adequate resources are allocated for diagnosis and treatment, and that the rights of persons with rare diseases are protected under Kenyan law.

The Data Access and Governance Committee is responsible for the stewardship of all data generated by and submitted to the PIDNET-Kenya Network Registry. Its primary function is to operationalize the principles of confidentiality, informed consent, and data minimization.

Specifically, the Committee reviews all proposals from individuals or institutions requesting access to registry data, evaluating them for scientific merit, ethical compliance, and alignment with PIDNET-Kenya’s public-benefit mission. It ensures that no data is released without a formal Data Access Agreement (DAA) that binds requestors to strict usage protocols. Furthermore, the Committee advises the Network’s leadership on the development and implementation of policies regarding data collection, storage, sharing, and long-term preservation. By balancing the imperative of scientific collaboration with the non-negotiable duty of patient privacy, this committee acts as the guardian of the Network’s digital trust.