The MECUD dashboard provides a data-driven overview of collaborative activity across participating institutions, including patient recruitment, genomic investigation, diagnostic outcomes and regional participation.

Where permitted by governance and participant consent, aggregated metrics can illustrate how unresolved cases progress through reanalysis, case matching and complementary genomic or functional investigation.

MECUD operates as a distributed regional collaborative connecting clinical recruitment sites, sequencing laboratories, biobanks, analytical groups and functional research teams across participating Middle Eastern countries. The map below illustrates the institutions currently contributing patients, data, analysis or specialist capabilities to the network.

Patients meeting MECUD eligibility criteria are identified through participating clinical centres and enrolled under locally approved consent and governance frameworks. Clinical sites undertake detailed phenotyping and collect relevant biological samples.

Centres without local sequencing capacity may transfer appropriate samples, under agreed material-transfer and governance arrangements, to designated sequencing hubs within the network. Samples or derived materials can be securely biobanked at participating facilities using harmonised standards for storage, access, tracking and future use.

Sequencing institutions generate and analyse genomic data while retaining institutional stewardship. Federated-access models allow authorised collaborators across MECUD to interrogate relevant genomic and phenotypic information for joint interpretation without requiring all sensitive data to be transferred to a single repository.

When candidate variants, genes or biomarkers require experimental evidence, cases can be connected to appropriate functional capabilities elsewhere in the network.

Each participating institution contributes according to its capabilities. Some centres primarily serve as clinical recruitment nodes, identifying patients, undertaking phenotyping and collecting samples. Others provide sequencing, bioinformatics, biobanking, multi-omics or functional-validation capabilities.

MECUD connects these complementary strengths through common phenotypic standards, shared governance and federated analytical approaches. Participating researchers remain actively involved in interpretation and discovery, allowing the network to function as a collaborative regional system rather than a unidirectional sample-referral programme.

MECUD brings together academic institutions, healthcare systems, diagnostic laboratories, research groups, patient communities and appropriate industry partners to advance the diagnosis and discovery of rare and undiagnosed diseases across the Middle East.

The collaborative promotes interoperable phenotyping, secure data sharing, case matching, genomic reanalysis and joint interpretation. Where appropriate, established platforms and international standards can support interoperability with the broader rare-disease community.

Each collaboration operates under applicable national and institutional governance frameworks, together with agreed MECUD principles for data security, scientific participation, authorship, sample use and cross-border collaboration.

Do not state that ClinGen, seqr or GenomeConnect are formal “partners” unless formal partnership agreements exist. If they are tools or platforms being used, describe them as such.