Program Overview

🔷 Regional Map: Recruitment Network

MECUD establishes a collaborative network of referral hubs across Saudi Arabia, Kuwait, Qatar, Jordan, Lebanon, Egypt, Turkey, Iraq, and Yemen, integrating them into a unified clinical-genomic system. This initiative directly addresses the significant regional shortage of geneticists, counsellors, and bioinformaticians, which is estimated to be 20 times lower than in North America.

By establishing standardised workflows and a shared digital infrastructure, these centres contribute to a federated data ecosystem supported by GenomeConnect, enabling patient consent and long-term updates, as well as seqr, which aids in data interpretation and variant curation. The map below displays all participating centres, highlighting MECUD's expanding regional influence and its alignment with global genomics initiatives.

MECUD Regional Recruitment Network Map

🔷 Program Milestones

2026 - Launch & Infrastructure Setup

Official Launch of MECUD in Dubai, UAE MECUD formally established as a regional center under Dubai Health and MBRU. Governance, ethics, and data frameworks approved. Core infrastructure deployed, including the Regional Undiagnosed Disease Registry, biobank integration, and secure digital data ecosystem. Recruitment begins for the first patient cohort across UAE pilot hospitals.

2027 - Pilot Cohort & Network Consolidation

Operationalization of Regional Referral Network Multi-country recruitment initiated (UAE, Saudi Arabia, Qatar, Lebanon, Jordan). Clinical and multi-omics pipelines validated. AI-assisted variant interpretation and sequencing workflows implemented. First translational results generated, including 60% diagnostic yield target in undiagnosed cohorts.

2028 - Regional Expansion & Functional Genomics Activation

Network Grows to 8+ Partner Countries Expansion of recruitment and sequencing capabilities across the Middle East and North Africa. Establishment of zebrafish, iPSC, and Drosophila functional cores. Launch of MECUD Catalyst Program to fund collaborative functional validation projects with regional partners.

2029 - AI-Driven Data Integration & Translation

Advanced Multi-Omics and AI Ecosystem Implementation of federated AI and machine-learning diagnostic platforms for variant prioritization. Launch of open-access variant browser and regional registry portal. At least 100 novel biomarkers and 5–10 new disease genes identified. Establishment of two industry partnerships for biomarker and therapeutic co-development.

2030 - Tele-Genomics & Sustainable Translation Stage

Launch of Telemedicine and Preventive Genomics Programs Deployment of tele-genomics and cross-border case review systems. Integration of predictive and preventive genomics (newborn screening, carrier testing). Training of >20 research fellows and 5 postdocs annually. Establishment of sustainability model through service-based revenue and IP licensing

Dashboard - Data & Insights

📊 Dashboard Overview

The MECUD interactive dashboard provides a transparent, data-driven view of the region's growing role in discovering undiagnosed diseases. It effectively visualises patient demographics, diagnostic yield, sequencing progress, and country representation, while also showing trends over time.

By integrating with seqr's variant-tracking infrastructure, the dashboard demonstrates how cases progress from "unsolved" to "resolved," thanks to ongoing reanalysis and Variant-Level Matching (VLM). Furthermore, linking to GenomeConnect's patient registry allows MECUD to share anonymised insights into variant reclassification outcomes. This creates a learning ecosystem that links clinical practice, research, and patient involvement.

1,247
Patients Enrolled
23
Active Sites
2,891
Total Samples
487
Resolved Diagnoses
12.4
Mean Age (years)
39%
Diagnostic Yield
8
Countries Represented

📊 Demographics

Age Distribution

Sex Ratio

Top Referring Countries

Disease Categories

🧬 Genomic Analytics Snapshot

Sequencing Performed

WGS: 892 | WES: 1,456 | RNA-seq: 234

Average Turnaround Time

45 days (from sample receipt to report)

Diagnostic Yield by Category

Neurology: 42% | Metabolic: 38% | Immunology: 35%

Multi-omics Integration

156 cases with integrated genomic and transcriptomic data

🌍 Regional Reach

MECUD's network spans across the Middle East and North Africa region, establishing collaborative partnerships with leading medical institutions and research centers. The map below illustrates our current active recruitment centers and partner institutions across multiple countries, demonstrating the extensive reach of our genomic research initiative.

MECUD Regional Reach and Partner Network

10 Countries

Active in MENA Region

23+ Centers

Partner Institutions

Regional Hub

Dubai, UAE

📈 Trends & Pipeline Metrics

Monthly Recruitment & Sequencing Throughput

Patient Journey Funnel

Referred: 1,850
Consented: 1,572
Sample Received: 1,295
Sequenced: 1,247
Diagnosed: 487

Logistics & Participation

📋 Participation Methodology

This section outlines the methodology by which clinicians, participants, and partner institutions can participate in MECUD's genomic workflow. Patients who meet the specified inclusion criteria will undergo a digital consent process modeled after GenomeConnect, which allows the secure use of their data for future research reanalysis.

Samples, including DNA, RNA, plasma, or fibroblasts, collected at partner institutions will be barcoded, carefully documented, and sent to the sequencing hub in Dubai, following standardised protocols.

Data analysis will use MECUD's AI-assisted pipelines and will be incorporated into seqr for variant prioritisation and automated reanalysis. This structured approach effectively addresses ongoing regional issues of fragmented workflows, limited data reuse, and inconsistent infrastructure, thus creating a unified cross-border pipeline that supports patient recruitment, diagnosis, and discovery.

🧭 Enrollment Overview

1

Identify Eligible Patient

Clinician identifies patient meeting inclusion criteria

2

Complete e-Consent

Upload clinical summary and obtain patient consent

3

Collect Samples

Collect and properly label biological samples

4

Ship to Dubai

Ship samples to MECUD sequencing facility

5

Receive Results

Access diagnostic results via secure platform

🚚 Shipping Workflow

Local Site
DHL Packaging
Customs Clearance
MECUD Biobank
Sequencing
QC
Data Integration

🧫 Recruitment Centers

Each partner centre acts as a national hub for clinical recruitment, sample processing, and data contribution within the distributed framework of MECUD. Through direct integration with Seqr and GenomeConnect, local researchers gain access to variant curation tools, data-sharing infrastructure, and training resources that meet international standards.

Patients enrolled at these centres can securely share updates and new medical information, thereby improving the long-term quality of data and the accuracy of variant interpretation. This network includes the United Arab Emirates, Saudi Arabia, Kuwait, Qatar, Jordan, Lebanon, Egypt, Turkey, Iraq, and Yemen, establishing the region's first interconnected genomic and clinical network capable of facilitating real-time collaboration and discovery.

Country Center Principal Investigator Contact Status
🇦🇪 UAE Dubai Health / MBRU Dr. Ahmad Abou Tayoun contact@mecud.ae Active
🇸🇦 Saudi Arabia King Faisal Hospital Dr. Mohammed Al-Saud kfh@mecud.ae Active
🇪🇬 Egypt Cairo University Dr. Fatima Hassan cairo@mecud.ae In Progress
🇰🇼 Kuwait Kuwait Medical Center Dr. Khalid Al-Mutairi kuwait@mecud.ae Active
🇶🇦 Qatar Sidra Medicine Dr. Noor Al-Thani qatar@mecud.ae Active
🇱🇧 Lebanon American University of Beirut Dr. Rami Khoury lebanon@mecud.ae Active
🇯🇴 Jordan King Hussein Medical Center Dr. Layla Mansour jordan@mecud.ae Active
🇹🇷 Turkey Istanbul Medical Faculty Dr. Mehmet Yilmaz turkey@mecud.ae In Progress

Collaborate / Get Involved

🤝 Partnership Framework

MECUD is dedicated to fostering collaboration with academic institutions, healthcare systems, and industry innovators to advance research on undiagnosed diseases across the Middle East and North Africa. By establishing partnerships with ClinGen, seqr, and GenomeConnect, MECUD has created a comprehensive framework for secure data sharing, automation of reanalysis processes, and international interoperability.

Each partnership operates within governance frameworks compliant with UAE regulations and the General Data Protection Regulation (GDPR), ensuring the highest standards of data security, transparency, and long-term sustainability, while contributing to the development of a globally connected regional genomics ecosystem.

🤝 How to Get Involved

1

Submit Interest Form

Complete our online collaboration interest form

2

Discussion

Meet with MECUD collaboration team to discuss opportunities

3

Agreement

Formalize partnership through MOU, DUA, or Sponsored Research Agreement

📍 Contact & Governance

MECUD Collaboration Desk

Email: collaborate@mecud.ae

Phone: +971 4 XXX XXXX

Address: Dubai Health, Mohammed Bin Rashid University, Dubai, UAE

Data Governance & Legal Framework

All collaborations operate under strict data governance policies, including:

  • UAE Data Protection Law compliance
  • GDPR standards for international collaborations
  • IRB approvals for research activities
  • Secure data sharing agreements
Download Data Privacy Statement