African PID Registry | ASID Registry

The Problem We Are Solving

The Diagnostic Gap in Africa

Across Africa, children and adults with Primary Immunodeficiency Disorders (PIDs) are dying with labels of "recurrent TB," "treatment-resistant sepsis," and "unknown cause." The systems to recognize the pattern beneath these presentations do not exist or could be stronger.

Three failures that cost lives every day:

Failure	The Reality
A. Misdiagnosed as common infections	Children with PID are repeatedly treated for TB, malaria, or bacterial sepsis. The immunological root cause is never identified.
B. High mortality before diagnosis	Families lose children to what appear to be "ordinary" infections. The underlying deficiency — and the heritable risk — is never documented.
C. Invisible to policy makers	What is not counted does not get funded. Without burden-of-disease data, PIDs compete for zero resources against diseases with robust registries.

A registry is the foundational intervention that addresses all three failures simultaneously.

The question that drives us:

"How do we treat what we cannot see? How do we fund or research what we cannot count?"

What Is the ASID Registry?

The ASID Registry: An Organised, Living List

A registry is an organised, living list of patients with a shared condition — their diagnoses, treatments, outcomes — collected with consent and held securely. The ASID Registry is building this infrastructure across Africa.

What the registry captures:

Data Category	Information Collected
Demographics	Age at onset, sex, region, consanguinity
Diagnosis	IUIS phenotype, molecular result, diagnostic delay
Treatment	IVIG access, prophylaxis, HSCT outcomes
Outcomes	Survival, complications

Registry Infrastructure: Built on REDCap

The ASID multi-country PID registry is built on REDCap (Research Electronic Data Capture) — a secure, governed, multi-site platform used in over 160 countries.

Security features:

🔒 HTTPS encryption
🔒 Role-based access control
🔒 Audit trails on every record
🔒 Two-factor authentication
🔒 IRB/ethics-ready consent logging
🔒 De-identification tools built in

Data Access Groups (DAGs):

Each country or site operates as one DAG
Sites see only their own patients
Patient privacy preserved across borders
Scalable: new countries or sites = new DAGs

Data Governance:

Data Governance Working Group oversees all access
National ethics approval required before enrolment
Minimum dataset aligned to ESID/IPOPI international standards

*REDCap is free for non-commercial research • Vanderbilt University, est. 2004*

For Immunologists & Specialists

Build the Infrastructure for African Science

Action	Why It Matters
Champion registry enrolment	Retrospectively enrol confirmed patients. Establish prospective enrolment as standard of care. Even 50 records at a single centre is a landmark African dataset.
Contribute to global standards	A minimum dataset compatible with the IUIS classification means African data integrates with global science from the first record entered.
Publish African data, even small series	A 12-patient case series of CGD in Kenya or another African country carries scientific weight when it is the only African data in that disease category. Small series matter enormously.
Partner for sequencing infrastructure	Whole-exome and whole-genome studies on registry patients will identify novel African-specific PID genes.
Make African sites trial-eligible	Gene therapy and biologics are transforming PID outcomes. African patients are excluded because they are invisible to trial infrastructure. A registry is the prerequisite for inclusion.
Apply for registry-specific funding	Wellcome Trust East Africa, NIH Fogarty International, and EDCTP have all funded rare disease registries in similar resource settings. The data you generate is the application.

For Clinicians

Add Immunological Thinking to Your Practice

Step	Action
01. Recognise the pattern	Four or more ear infections per year, two or more serious bacterial infections, or infections caused by unusual organisms — these are not bad luck. They are a signal.
02. Add immunology to your differential	Lymphopenia on a routine FBC. Persistent thrush in a child without known risk factors. BCG site that does not heal. Each is a potential presenting sign of PID.
03. Refer early and document fully	When you refer to immunology, document the complete presenting history. Your observation is the first data point in that patient's registry record.
04. Enrol your diagnosed patients	When a PID patient is confirmed at your centre, enrol them. Every record you contribute is infrastructure for the next clinician who sees a child like yours.

For Patients

How Registries Close the Gap for Families & Communities

Warning Signs That Need Investigation

If your child has any of these signs, ask your doctor for an immunological assessment. Early diagnosis is the difference between preventable harm and a healthy life.

Warning Sign	Description
⚠️	4+ ear infections in a year
⚠️	2+ serious bacterial infections (pneumonia, meningitis, sepsis)
⚠️	Infections that don't respond to normal antibiotics
⚠️	Infections caused by unusual organisms
⚠️	BCG injection site that does not heal normally
⚠️	A sibling who died of unexplained infection
⚠️	Parents who are related to each other (consanguinity)

What This Means for Your Family

If your child is diagnosed with a PID, consenting to registry enrolment means that a doctor elsewhere, seeing a similar child for the first time, can recognize what they are facing. One data point is a gift. A thousand data points saves lives.

For families:

📋 Your data protects the next family
📋 Each enrolled patient builds a reference database of presenting patterns specific to African patients
📋 Clinicians can flag immunological workup years earlier

Get Involved / Call to Action

The ASID Registry Is an Act of Recognition

"The ASID registry is an act of recognition — that patients with PIDs exist, that patients with PIDs matter, and that AFRICA has both the obligation and the capacity to count them."

Join the movement:

Audience	Call to Action
Patients	Consent to registry enrollment. Promote the importance of a Registry. Ask your physician if he/she is part of an African Registry
Clinicians	Recognise the pattern. Refer early. Document fully.
Immunologists	Enrol your patients. Champion the registry. Publish African data.
Policy Makers	Fund what gets counted. Support national PID registries.