Beyond a Decade of MENACTRIMS: Scientific Achievements, Publicly Documented Implementation Gaps, and a Roadmap to a Regional Learning Health System

1. Introduction

Multiple sclerosis (MS) care requires coordinated diagnosis, treatment selection, safety monitoring, rehabilitation, pregnancy and vaccination planning, and sustained access to specialist services. Across the Middle East and North Africa (MENA), differences in financing, diagnostic resources, medicine availability, workforce, and data infrastructure complicate delivery of these services. Regional scientific organizations can help translate shared expertise into standards, professional capability, collaborative research, and practical support for care improvement.

MENACTRIMS describes its mission in terms of communication among clinicians and scientists, research development, and improved clinical outcomes [1]. Founded in December 2012, it developed a portfolio spanning congresses, guidelines, a multinational registry, grants and fellowships, center certification, and partnerships with professional and patient organizations [2]. Both authors participated in its foundation. This proximity provides historical perspective and also requires explicit disclosure of potential favorable and critical preconceptions.

Organizational assessment must distinguish what an institution produces from what its activities change. Donabedian’s structure–process–outcome framework, RE-AIM, and implementation-outcome concepts offer established foundations for this distinction [3,4,5]. Learning-health-system models extend the argument: knowledge generated from care should return to practice through repeated implementation, measurement, and refinement [6,7]. Applied to a professional organization, these concepts support an examination of outputs, reach, implementation, and health-system or patient outcomes, with a separate assessment of attribution.

A congress attendance count describes reach, but not subsequent practice change. A guideline establishes a standard, but does not show that every participating health system can implement it. A registry-based treatment study may measure patient outcomes without evaluating the causal contribution of the organization that supports the registry. Conversely, the absence of public outcome summaries cannot establish the absence of internal monitoring or benefit. An informative assessment must recognize documented achievements, acknowledge existing evaluation mechanisms, and identify precisely what the public evidence does and does not permit readers to conclude.

The contribution of this study is an integrated assessment of MENACTRIMS’ publicly documented activities using a common analytical framework. It examines the relationship between institutional mission and available evidence across several functions, rather than offering a comprehensive organizational ranking or a causal evaluation. A particular focus is whether congress hosting, governance representation, certification, and registry contributions have similar geographic distributions. Differences may reflect complementary roles, participation histories, or constraints; their value is to generate testable questions about coordination and opportunity.

The objectives were to characterize scientific, educational, capacity-building, certification, and advocacy achievements; identify evidence on implementation and regional care constraints; compare the geography of major public-facing functions; and develop feasible priorities for a regional learning health system. The analysis covers the first ten completed congresses and retains an August 2026 historical cutoff, with a separate October 2026 update. The forthcoming Eleventh Congress, scheduled for 4–5 December 2026 with pre-congress activities on 3 December, provides a timely setting for discussing the roadmap, but its projected participation is not treated as an observed outcome [8].

2. Methods

2.1. Design and Temporal Scope

This study is a structured public-document audit with a targeted, non-systematic evidence synthesis. The historical activity window extends from the first congress in 2014 through 23 August 2026. On 16 October 2026, selected official webpages were retrieved again, the principal registry and geographic calculations were reproduced, and corrected PubMed searches were executed. The historical cutoff, date of source retrieval, and publication or event date are treated as distinct variables. Current webpage retrieval cannot authenticate the exact content displayed in August unless a contemporaneous capture exists.

The units of analysis were organizational documents, meeting reports, publicly listed programs, associated scientific publications, documented advocacy contributions, and regional empirical studies relevant to implementation. Only publicly accessible material and published aggregate observations were used. No patient-level registry access, confidential organizational documents, or privileged internal information formed part of the analysis. The audit describes the accessible public record, rather than the totality of MENACTRIMS operations.

2.2. Geographic Frame

An operational MENA-19 frame, consistent with regional MS access research, was used for geographic summaries [9]: Algeria, Bahrain, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon, Libya, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Sudan, Syria, Tunisia, United Arab Emirates (UAE), and Yemen. This is an analytical convention rather than a universal definition of MENA. Council geography follows the jurisdiction shown beside each member’s listed professional location, not assumed nationality. The term jurisdiction accommodates the source terminology without making a geopolitical claim.

Hosting counts refer to completed congresses during 2014–2025. Council and center listings represent dated public snapshots. These are different measures with different time bases and cannot be interpreted as equivalent indicators of country performance. A jurisdiction without a listed registry center is coded as having no publicly listed center, not as having no national registry, no patients, or no contribution through other channels.

2.3. Sources and Targeted Literature Searches

Official sources comprised the organizational website, congress archive and outcome reports, guideline and registry pages, council and committee listings, grants and fellowship terms, certification standards and center lists, and allied-health programs [10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29]. Contemporary meeting reports were preferred to promotional estimates. The 2025 congress figure of “1000+ participants” was retained as a lower-bound post-event report rather than an exact value [19]. The joint MENACTRIMS–ECTRIMS workshop was examined separately from the congress series [30].

Three corrected PubMed queries were executed on 16 October 2026 through NCBI E-utilities: an organizational-output query; a regional implementation query incorporating all 19 jurisdictions, including Egypt and Algeria; and a policy/access query. The implementation terms included access, barriers, affordability, insurance, implementation, diagnostic delay, quality of care, treatment continuation, treatment continuity, treatment interruptions, inequities, and disparities. Publication-date limits were 1 January 2014 to 16 October 2026. Full executed strings, returned counts, query translations, and retrieved record identifiers are preserved in Supplementary Dataset 1 and Supplementary Methods.

The literature component was purposive. Sources were selected for direct organizational relevance, an explicit funding or fellowship acknowledgment, a documented policy contribution, or empirical information on regional access, diagnostic pathways, or quality measurement. Searches were supplemented by reference tracing, official program documents, and publisher acknowledgment sections because an organization’s name may be absent from an article’s title and abstract. The returned records are a discovery set, not a systematic-review screening denominator. No claim of exhaustive coverage, duplicate-independent screening, or formal risk-of-bias assessment is made.

2.4. Extraction and Evidence Classification

The accompanying dataset was assembled for the October update from the manuscript’s reported observations and retrieved public sources. It is a reconstruction of the analytical record, not a representation of an unavailable contemporaneous August extraction workbook or registered protocol. It preserves source identifiers, retrieval dates, displayed values, reconciliation decisions, and verification status. The historical search execution log was not available for this reconstruction, and prespecification of the original workflow cannot be established retrospectively.

Extraction covered dates, locations, meeting format, attendance and geographic terminology, faculty and continuing medical education (CME), professional participation, registry displays, council locations, certification, training terms, and traceable research outputs. Unresolved discrepancies were recorded explicitly. The update used AI-assisted document processing, source retrieval, and reproducible calculation; it did not constitute duplicate-independent human extraction.

Provenance was classified as A, official MENACTRIMS material; B, MENACTRIMS-associated peer-reviewed research; C, regional peer-reviewed evidence used for context; or D, external partner or policy documentation. These categories describe origin, not methodological quality. Category C does not imply investigator independence from MENACTRIMS. Evidence was further described by what it demonstrates: an output, reach, a specified implementation mechanism, observed implementation, patient-outcome research, or a policy contribution. Patient-outcome research and organizationally attributable benefit were kept separate. No weighted score, ordinal performance rating, or country league table was produced.

2.5. Data Handling and Descriptive Calculations

Source terms such as delegates, attendees, participants, registrations, countries, and nationalities were preserved. Not reported (NR) was not coded as zero. Seven congresses provided exact headline attendance counts: 2016, 2017, 2018, 2019, 2021, 2023, and 2024. Median, range, and linearly interpolated 25th and 75th percentiles were calculated. The 2025 value of “1000+” was reported separately. No cumulative unique-delegate estimate was attempted, because attendance may recur between years. Country-based and nationality-based reach were summarized separately.

Public registry rows were reconciled at the displayed-center level. The repeated Maadi MS Center entry, each displaying 10 patients, was counted once; this removes a duplicated webpage row and is not patient-level deduplication. A center marked “Recently Joined” without a number was retained as listed but excluded from the numeric sum. The resulting enumerable total, 14,438, was used for country shares. Ratios of variable-display totals to the headline 15,387 were calculated only to describe public denominator concordance. They are not validated field-completeness estimates because the underlying snapshot dates, eligibility rules, and patient-level missingness are unknown.

The disease-category display includes clinically isolated syndrome and NMOSD. Accordingly, the headline is described as reported enrollment or registry records without assuming that every record represents confirmed MS. Current lists and historical hosting counts were assembled for all 19 jurisdictions. Numerical summaries and both figures were generated with reproducible scripts supplied with the supporting dataset. No inferential tests were applied to descriptive differences between organizational functions.

2.6. Reflexivity and Organizational Independence

Both authors are founding members of MENACTRIMS and have contributed to scientific outputs considered in this audit. The public organizational committee page lists S.A.B. as Scientific Committee Chair, and the council page lists him as a member [21,29]. These organizational roles are distinct from committee roles for a particular congress. The public council listing does not identify I.A. as a current member; historical involvement should not be interpreted as a current appointment.

The analysis was not commissioned or funded by MENACTRIMS, and it does not represent an official organizational position. Interpretations are the authors’ responsibility. No organizational factual-verification response is incorporated in the accompanying evidence record. Such clarification could resolve dynamic reporting discrepancies, but organizational endorsement is not a prerequisite for an independent analysis. This distinction preserves both factual accuracy and independence of interpretation.

3. Results

3.1. Congress Continuity and Educational Reach

Ten completed congresses were documented between 2014 and 2025: Dubai in 2014, Amman in 2016, Dubai in 2017–2019 and 2021, Cairo in 2022, Abu Dhabi in 2023, Jeddah in 2024, and Dubai in 2025 [10,11,12,13,14,15,16,17,18,19]. Seven of ten congresses were hosted in the UAE, including six in Dubai. Archive date typographical errors were resolved using dated event documents; these discrepancies are retained in Supplementary Table S1. Table 1 presents one consolidated congress series.

Exact headline attendance was 591 in 2016, 934 in 2017, 842 in 2018, 681 in 2019, 1,047 in 2021, 1,042 in 2023, and 971 in 2024. The median was 934, the interquartile range was 761.5–1006.5, and the range was 591–1047. The 2017 total included 186 virtual participants; these were not added to 934. The 2021 report distinguished 1,740 registrations from 1,047 participants who joined, comprising 495 physical and 552 virtual attendees. The 2025 post-event report gave “1000+ participants”; this lower-bound value was not imputed as exactly 1,000.

The 2014 value of 454 was a derived sum of displayed location categories rather than a verified headline attendance count. No reliable headline total was available for the 2022 congress in the material used. These observations remain NR rather than entering the attendance distribution. Across 2016–2018, reported reach was 30, 38, and 41 nationalities, with a median of 38. Across 2021 and 2023–2025, reported reach was 44, 34, 27, and 33 countries, with a median of 33.5. These summaries describe heterogeneous source measures and should not be read as a standardized trend.

Repeated nursing, allied-health, rehabilitation, and patient-organization sessions document a broader educational remit. However, the available reports did not support a consistent cross-year denominator for direct patient attendance, professional mix, learning gains, or practice change. Sponsor identification in programs is an existing transparency practice. Separately, the MENACTRIMS–ECTRIMS workshop held on 11–12 April 2025 reported 308 attendees, providing a further documented example of international educational collaboration [30]. Its attendance is not added to the congress statistics.

3.2. Guidelines and Policy Contributions

Five major guideline outputs or revisions were identified: the 2015 MS recommendations, the 2019 revision published in 2020, COVID-19 vaccination guidance in 2021, the 2023 revision published in 2024, and NMOSD recommendations in 2026 [31,32,33,34,35]. This sequence demonstrates recurrent regional standard-setting. It is a defined set of major guidance documents, not an exhaustive count of every consensus statement or endorsement involving MENACTRIMS-associated investigators.

Policy engagement extends beyond guideline publication. MENACTRIMS endorsed the MSIF-led application for MS disease-modifying therapies (DMTs) on the World Health Organization (WHO) Essential Medicines List; MENACTRIMS-associated expertise also contributed to the broader international process [36]. WHO subsequently listed cladribine, glatiramer acetate, and rituximab in 2023 [37]. An accompanying implementation-focused editorial emphasized the work required after listing [38]. Earlier, MENACTRIMS endorsed international principles for ethical off-label DMT use [39]. These are documented contributions to collective policy efforts, not evidence that MENACTRIMS alone caused the listing or subsequent national access changes.

The MENA Region Access to Treatment Charter, developed with patient organizations and supported by MSIF and MENACTRIMS, offers another pathway for regional advocacy [40]. Such contributions warrant recognition alongside scientific outputs. Whether they change reimbursement, procurement, prescribing, or treatment continuity within individual countries requires a separate downstream evaluation with explicit dates and denominators.

3.3. Registry Scale and Interpretation of Public Denominators

The public registry page reported 15,387 enrolled patients, a figure reproduced in the historical manuscript and still displayed at the October update [20]. Counting the duplicated 10-patient Maadi row once and excluding the unnumbered recently joined center yielded 14,438 enumerable center records, or 93.8% of the headline. The displayed sex counts totaled 14,443; age-at-onset and disease-duration counts each totaled 14,320; disease categories totaled 12,910; and age-at-diagnosis counts totaled 12,119. These correspond to 93.9%, 93.1%, 83.9%, and 78.8% of the headline, respectively. Supplementary Table S2 preserves the calculations and their restricted interpretation.

The differences cannot identify a true missing-data rate. Display panels may have different refresh dates, cohort definitions, validation status, or reporting rules. Without a shared reference date and eligible denominator, the 3,268-record difference between the smallest display and the headline cannot be described as 3,268 missing diagnosis ages. Similarly, the 949-record difference between the center sum and the headline is a public reconciliation question rather than proof of an error in the underlying database.

The disease-category display includes 778 clinically isolated syndrome records and 263 NMOSD records, alongside categories of MS [20]. This reinforces the need to distinguish the webpage headline from a verified contemporary cohort of confirmed MS. The legacy categories are reported as displayed; the audit neither reclassifies patients nor infers current diagnostic status.

The platform has supported substantive research. Identified publications include an epidemiological and phenotypic analysis of 6,885 patients, a COVID-19 study of 600 patients, a seven-country comparative-effectiveness study of 1,954 patients, and a seven-country rituximab study of 774 patients [41,42,43,44]. These cohorts may overlap and must not be summed as unique individuals. They demonstrate scientific productivity and the capacity to study clinical outcomes; they do not isolate the causal effect of MENACTRIMS participation on care.

3.4. Geographic Distribution of Organizational Functions

Among the 14,438 enumerable center records, Iran contributed 4,401 (30.5%), Egypt 3,567 (24.7%), and Kuwait 2,914 (20.2%), together accounting for 75.4%. Lebanon contributed 1,513 (10.5%), Tunisia 913 (6.3%), the UAE 495 (3.4%), Oman 329 (2.3%), and Saudi Arabia 306 (2.1%). These are shares of displayed numeric center contributions, not national prevalence, burden, registry coverage, or representativeness.

The public council page listed 22 members across 15 of the 19 jurisdictions (78.9%); publicly listed registry centers covered eight jurisdictions (42.1%); and the certified-center list contained three centers across two jurisdictions (10.5%) [20,21,22]. The listed certified centers were Rashed/Rashid Hospital in Dubai, Khoula Hospital in Muscat, and Burjeel Hospital in Abu Dhabi. The listing supplies certification dates but is not a complete public record of renewal decisions or current certificate validity.

Libya, Sudan, Syria, and Yemen were absent from the council listing. Seven council-represented jurisdictions—Algeria, Bahrain, Iraq, Jordan, Morocco, Palestine, and Qatar—had no publicly listed registry center. Figure 1 displays all 19 jurisdictions, including those without numeric registry contributions, so that the eight contributing jurisdictions are not mistaken for the full geographic frame. The underlying country matrix is supplied in Supplementary Dataset 1.

The distributions differ: the UAE hosted seven congresses and contained two listed certified centers, whereas Iran, Egypt, and Kuwait supplied most enumerable registry records. The finding establishes geographic differentiation, not deficient integration. Importantly, the seven-country rituximab publication includes Iraq, although Iraq is absent from the public center listing [44]. This directly demonstrates that the webpage geography is not a complete inventory of the published research network. Travel connectivity, institutional size, duration of participation, local research infrastructure, and the availability of organizational hubs are additional plausible explanations that were not tested. No measure was adjusted for population, MS burden, center size, or exposure time.

Only Rashid Hospital could be directly matched by name between the public certification and registry lists. The absence of identical names for the other certified centers does not establish absence of registry activity: participation could occur under another name, through another registry, or after an asynchronous webpage update. Name matching therefore identifies a reporting question, not a compliance judgment.

Registry shares are calculated from 14,438 enumerable center records. All 19 jurisdictions are shown. “Not listed” does not imply absence of patients, national registry activity, or research contribution; Iraq is included in a registry publication despite its absence from the public center list. Council and certification counts describe public listings retrieved on 16 October 2026; congress counts cover 2014–2025. Different time bases and functions prevent interpretation as country performance. Sources [10,11,12,13,14,15,16,17,18,19,20,21,22,44].

3.5. Certification and Capacity Building

Certification is an established implementation mechanism. The published standards require relevant infrastructure, clinical expertise, evidence-based practice, staff education, research participation, and standard operating procedures. Assessment includes an onsite visit by two external experts, and renewal is required every three years. Maintaining a patient registry is preferred, with participation in the MENACTRIMS registry specifically encouraged [28]. The relevant public reporting gap is the availability of aggregate renewal status, uptake of preferred requirements, audit findings, and improvement results—not absence of a renewal policy or registry connection.

MENACTRIMS describes competitive research grants of up to US$25,000 each and research and clinical fellowship support of US$50,000 for one year, with proportionate three- and six-month awards [23,24,25]. The UAE National Multiple Sclerosis Society–MENACTRIMS partnership provides clinical and research fellowship tracks for Emirati physicians and scientists; its national eligibility should be distinguished from broader regional programs [26]. A physiotherapy and MS rehabilitation internship extends development opportunities to allied-health professionals [27].

Monitoring requirements are already stated in program terms. Research fellows must submit progress and final reports, while clinical fellows must provide a completion report and maintain contact for career follow-up [24,25,26]. These requirements demonstrate program design for accountability. The accessible material did not yield a complete historical aggregate series of applications, awards, completion, publications, recipient geography, subsequent funding, or career outcomes. Whether these indicators are collected internally cannot be determined from their public availability.

Traceable outputs include a MENACTRIMS-supported Saudi multicenter study of environmental exposures and MS [45]. In addition, Mrabet and colleagues’ systematic review of long-term outcome prediction explicitly acknowledges MENACTRIMS support for a clinical training fellowship at Barts-MS [46]. The acknowledgment links professional development to an identifiable publication; it does not imply that the fellowship funded every component of the review or establish an average program effect. Publicly listed initiatives in AI-assisted neuroimaging and paramagnetic rim lesions provide further evidence of research activity, but their password-protected details were not assessed [47,48]. Table 2 summarizes the documented programs and achievements.

3.6. Regional Implementation Evidence

Regional studies show why publication of guidance and professional education may be insufficient to overcome system constraints. An Atlas-based analysis covered 16 of 19 MENA countries and identified treatment cost as the leading access barrier in 47%, with treatment-continuation difficulties reported in more than half [9]. A survey of 98 neurologists across five Near East settings found reported use of MENACTRIMS guidance alongside treatment choices constrained by DMT availability [49]. The latter is evidence of reported uptake, not independently observed adherence or an estimate for every MENA clinician.

In an Abu Dhabi survey of 21 neurologists, respondents reported medication cost, insurance, insurer-policy, and guideline-coverage barriers [50]. An Iranian clinician survey similarly described diagnostic constraints despite high reported adherence to national guidance [51]. Qualitative Iranian evidence identified coordination, follow-up, resource, and access difficulties [52]. These studies differ in recruitment, setting, and measurement; their estimates should not be pooled or interpreted as contemporaneous national prevalence.

The corrected search also identified Egyptian evidence relevant to the audit’s geographic scope. A 2026 online survey of 143 neurologists found substantial engagement with updated diagnostic criteria but reported gaps in familiarity with emerging imaging markers and limited access to kappa free light-chain testing [53]. A separate 239-patient Egyptian multicenter observational study examined diagnostic and treatment delays and their associations with clinical severity [54]. These reports support attention to training, referral pathways, and diagnostic capacity. Their observational designs cannot show that delays or resource constraints were caused by MENACTRIMS or that an organizational intervention would necessarily remove them.

A UAE service-improvement review of 81 records assessed care against established quality measures and identified gaps involving cognitive assessment, sexual health, and employment discussions [55]. This provides a practical regional example of measurable care processes rather than evidence of improvement following MENACTRIMS activity. A Lebanese survey of 350 patients conducted during the economic crisis found that 216 (61.7%) reported no access to MS treatments; treatment discontinuation and lack of insurance were associated with poorer quality of life [56]. These dated observations illustrate the importance of treatment continuity and economic context. They should not be presented as current estimates for all Lebanese patients.

Evidence on ethnic disparities provides additional context for the limits of generalization and the need for representative regional research [57]. Taken together, the empirical literature supports a regional measurement agenda while demonstrating that the explanatory pathway includes financing, diagnostic resources, referral practices, and social conditions beyond the remit of one scientific organization.

3.7. Evidence from Mission to Impact

The evidence map in Table 3 separates documented production, reach, prescribed monitoring, observed implementation, policy participation, and patient-outcome research. Congress continuity, guideline revision, multicountry analyses, training schemes, certification requirements, and advocacy contributions are demonstrable achievements. Self-reported guideline use and explicit program monitoring provide implementation signals, with important limits on what they establish.

Recurring public summaries of program completion, renewal outcomes, field-level registry quality, and guideline-linked quality improvement were less readily ascertainable. That observation concerns the external evaluability of the public record. It cannot determine whether unpublished monitoring is absent, whether internal coordination is adequate, or how much regional care has improved because of MENACTRIMS. The next analytical step is to evaluate those questions directly with agreed indicators and appropriate study designs.

4. Discussion

4.1. Principal Findings and Their Interpretation

MENACTRIMS has established durable scientific and professional infrastructure across more than a decade of activity. Its contribution includes recurrent meetings, repeated guidance, a productive registry platform, structured professional development, a certification scheme with renewal requirements, and participation in international advocacy. The breadth of this portfolio is an institutional achievement in a region with diverse health-system resources and substantial barriers to comparable data collection.

The audit’s principal findings concern the public assessment of that infrastructure. First, scientific activity and program design are easier to document than recurring aggregate implementation results. Second, publicly displayed registry denominators require reconciliation before they can be interpreted as data-quality indicators. Third, the geographic distribution of different organizational functions varies. None of these findings is equivalent to organizational failure. Together they identify feasible improvements in reporting and evaluation, and specific hypotheses about how institutional components can support one another.

Geographic differentiation may be useful. A congress hub can provide logistical continuity, while other countries make large data contributions or deliver specialized training. The appropriate question is whether these roles offer fair access to participation, analytical leadership, funding, and patient benefit. Equal numbers of every activity in every jurisdiction would be neither a justified standard nor necessarily an efficient use of resources. Evaluation should examine transparent opportunity and supported participation, taking account of need, feasibility, and contribution.

4.2. A regional Implementation and Quality Observatory

A MENACTRIMS implementation and quality observatory could make existing work easier to evaluate and connect. It should align with the MSIF Atlas of MS rather than duplicate its epidemiological and health-system reporting [58]. Its added value would be a regional implementation layer linking common definitions, country-owned observations, registry quality, guideline-related processes, professional development, and certification results.

An initial dashboard should be small enough to sustain. Candidate measures include diagnostic intervals, availability of required investigations, time to DMT initiation, documented treatment interruptions, annual disability and patient-reported assessment, and the proportion of eligible centers submitting a defined minimum dataset. Each measure needs a numerator, eligible denominator, reporting period, source, and explanation of missing information. Country coverage is a useful participation measure, but it is not a substitute for patient coverage or representativeness.

The observatory should distinguish incomplete measurement from poor care. Centers with limited resources need technical support, not penalties for revealing gaps. Reporting should therefore include data-maturity descriptions and reasons for nonavailability. Patient and allied-health representatives can help select outcomes that matter in daily life, including fatigue, cognition, employment, treatment burden, and continuity. Aggregated public reporting can coexist with confidential center-level feedback and locally governed data access.

4.3. Registry Development and Responsible Data Use

Registry 2.0 is proposed as an extension of an established research platform. The first priority is a dated denominator dictionary specifying what the headline counts, which diagnostic groups are included, whether records are cumulative or active, and how center and variable displays relate to the same snapshot. Patient-level validation, field completeness, follow-up density, duplicate handling, and case ascertainment require direct registry access and cannot be inferred from public webpage arithmetic.

FAIR principles and international MS core-dataset work offer useful starting points for harmonization [59,60]. MSBase quality evaluation, Swedish completeness assessments, the Danish registry experience, and AHRQ guidance illustrate different approaches to validity, coverage, generalizability, and fit-for-purpose registry design [61,62,63,64]. These examples should inform proportionate local choices rather than impose an international ranking on a heterogeneous regional collaboration.

Diagnostic group, criteria version, treatment exposure, disability, and follow-up dates should be distinguishable in a common dataset. A cohort assembled for comparative effectiveness is not interchangeable with a prevalence registry; research questions should specify their own eligibility criteria and denominators. Similarly, publicly displayed enrollment should not imply national ascertainment without a suitable external denominator and a documented case-finding strategy.

The choice between centralized and federated analysis requires country-specific assessment of governance, privacy, security, and data-transfer requirements. UAE, Saudi, and Bahraini frameworks illustrate the need for jurisdiction-specific review [65,66,67]. Federated analysis may reduce the need to transfer patient-level data, but it is not automatically exempt from legal, ethical, or information-security requirements. The present audit does not determine legal compliance or recommend one architecture for every jurisdiction.

4.4. Guidelines Linked to Feasible Quality Improvement

MENACTRIMS’ guideline series provides a foundation for an implementation program. Each major update could be accompanied by a small set of measurable care processes, a short data dictionary, and an audit-feedback toolkit for volunteer centers. Candidate indicators include diagnostic timeliness, appropriate MRI protocols, treatment initiation and interruption, vaccination review, pregnancy counseling, disability assessment, and quality of AQP4-IgG and MOG-IgG testing where relevant.

The Egyptian diagnostic-readiness evidence illustrates why education and resources should be assessed together [53]. Knowledge of a revised criterion does not guarantee access to the assay or imaging expertise needed for its application. Conversely, possession of a technology does not demonstrate appropriate clinical use. Process measures should distinguish awareness, availability, utilization, and clinical appropriateness, rather than collapse these dimensions into a single adherence percentage.

A practical cycle is baseline measurement, feedback, a locally selected improvement action, and repeat assessment with the same definitions. Treatment interruption, for example, should be separated into clinical decisions, patient preference, insurance or procurement barriers, and other causes. Demonstrating improvement would require more than comparing two percentages: changes in case mix, staffing, financing, treatment availability, and data capture should be considered. Where feasible, phased implementation or comparison centers could strengthen attribution without obstructing routine quality improvement.

4.5. Building on Certification and Fellowship Monitoring

Certification already links infrastructure, practice standards, education, research, and a preference for registry participation [28]. The next step is to make its implementation more assessable: publish aggregate applications, certifications, renewals, deferrals, and common improvement domains, while respecting legitimate confidentiality. A dated public status list would help distinguish an original certification date from evidence of current validity. Renewals can provide an opportunity to review improvement cycles and use of a minimum dataset without making a single registry mandatory for every center.

Fellowship reporting requirements likewise provide an existing foundation [24,25,26]. Aggregated reporting could show the number of awards, duration, recipient and host geography, completion, publications acknowledging support, subsequent roles, and continued participation in regional care or research. Bibliographic tracing is valuable, as illustrated by the Mrabet publication, but it captures only one dimension of professional development [46]. Clinical expertise, mentoring, service creation, and return of capability to the region may be equally important and need appropriately designed follow-up.

Program evaluation should also account for opportunity. Application and selection denominators help distinguish unequal awareness or eligibility from selection patterns. Differences between a nationally targeted partnership and a region-wide program should be explicit. The objective is to make investments and their results understandable, not to equate publication counts with the full value of clinical training.

4.6. Participation and Scientific Governance

Geographic participation can be monitored across council and committee listings, congress faculty, abstracts, grants, training, registry analyses, and authorship. These dimensions should be reported separately because they represent different opportunities. The audit did not reconstruct historical tenure, elections, or leadership rotation and makes no inference about those processes from a current council webpage.

Countries contributing registry data should have transparent opportunities for methodological training, question development, analysis, and authorship consistent with substantive contributions. Jurisdictions without a publicly listed center may benefit from needs assessment and onboarding support. Early-career clinicians and researchers need defined roles, while patients, nurses, rehabilitation staff, and other professionals should contribute to priority setting and outcome selection. Conflict-affected settings may require flexible participation routes and support adapted to local constraints.

Industry collaboration is common in MS education and research. Sponsor labeling and publication disclosures are existing safeguards; sponsorship alone does not establish compromised independence. A consistent public approach could clarify the separation of scientific and sponsored programming, funding categories, relevant conflicts, and recusal arrangements for guideline, grant, and certification decisions. These proposals concern transparent governance and do not imply impropriety.

4.7. A Phased Roadmap for 2027–2035

The roadmap in Table 4 and Figure 2 connects existing functions through a repeated learning cycle. During an initial 2027–2028 phase, priorities would be denominator reconciliation, a common indicator dictionary, an agreed reporting structure, and a feasible pilot involving centers with different resource profiles. This phase should establish baseline values and workload before numerical improvement targets are negotiated.

During 2029–2031, participating centers could expand repeated audit-feedback, link certification review with locally relevant improvement evidence, and publish aggregated fellowship and registry-quality results. During 2032–2035, the emphasis could shift to sustained implementation, cross-country comparative analyses, and evaluation of patient-relevant changes. The phases are proposed planning intervals, not organizational commitments or validated performance standards.

The model requires defined responsibilities and resources. Registry teams would maintain data definitions and analytic access; guideline teams would develop feasible indicators; centers would own implementation; program committees would summarize results; and patient and professional representatives would help interpret priorities and burden. An annual synthesis could record both progress and adaptations. The framework should remain proportionate to MENACTRIMS’ capacity and complement national health authorities, providers, payers, and patient organizations.

Success would involve more than larger activity totals. It would include interpretable data, sustained participation, clearer training outcomes, documented improvement cycles, and credible evidence about changes in care. When outcomes do improve, attribution should reflect contributions from clinicians, health systems, patients, and partner organizations rather than assigning all benefit to one institution.

A repeated cycle links care, defined registry cohorts, public indicators, implementation, evaluation, and adaptation. Certification and training support learning, while country ownership, scientific independence, patient and professional participation, and lawful data use apply across the cycle. This is a proposed architecture for 2027–2035, not an existing MENACTRIMS operational structure or an evaluated intervention. Derivation: audit findings and established quality, implementation, registry, and learning-health-system concepts [3,4,5,6,7,28,58,59,60,61,62,63,64,65,66,67].

4.8. Strengths and Limitations

Strengths include explicit separation of source provenance and evidentiary purpose, preservation of attendance terminology, transparent reconciliation of registry displays, a complete MENA-19 comparison, and recognition of existing certification and fellowship monitoring requirements. The inclusion of policy endorsements, a joint workshop, and traceable training-linked research helps balance the assessment of achievements and reporting gaps. Reproducible calculations and the reconstructed source record make the October update inspectable.

Several limitations qualify the analysis. Public material is dynamic and often intended for communication rather than formal evaluation. Current captures cannot reconstruct unavailable historical snapshots, and a non-updated webpage does not establish that internal activity has stopped. Public center counts cannot identify patient-level duplicates, actual field completeness, eligible populations, active follow-up, or national coverage. Certification dates do not by themselves establish current validity. Country-level comparisons are unadjusted and combine historical hosting with contemporary listings.

The literature synthesis is targeted, not systematic. Corrected search results are preserved, but not all retrieved records underwent full-text assessment. Selection may favor well-indexed, English-language, or readily accessible publications, and omitted investigator acknowledgments may undercount support-linked outputs. There was no duplicate-independent extraction or formal risk-of-bias assessment. The reconstruction does not establish original prespecification, and author involvement in MENACTRIMS creates potential interpretive bias. These constraints limit comprehensiveness and should not be concealed by a formal-looking evidence map.

The regional studies are heterogeneous and often cross-sectional or self-reported. They identify plausible implementation needs but do not measure the effect of MENACTRIMS. Policy achievements arose from coalitions, and clinical outcome studies conducted through a registry are not evaluations of organizational impact. The audit did not systematically benchmark sibling organizations. It therefore cannot show that MENACTRIMS is uniquely deficient in reporting or that the proposed architecture would necessarily outperform existing arrangements. The roadmap is a testable proposal grounded in the documented infrastructure.

5. Conclusion

MENACTRIMS has built a substantial regional platform for MS science and professional development. Ten completed congresses, recurrent guidance, multicountry registry research, structured grants and fellowships, certification, allied-health education, and international advocacy demonstrate sustained institutional contribution. Existing requirements for certification renewal, registry participation, fellowship reporting, and career follow-up provide foundations for further evaluation.

The public evidence also identifies opportunities to improve interpretability and accountability. Registry displays need aligned definitions and dates; program monitoring would be more informative if aggregate results were accessible; and geographic differences warrant examination of participation and coordination without being treated as proof of failure. The proposed 2027–2035 roadmap connects these priorities through a regional observatory, strengthened registry governance, feasible guideline-linked audit cycles, and broader participation in scientific and quality-improvement work.

The purpose of this assessment is to support the next stage of institutional development. A credible learning health system would preserve MENACTRIMS’ scientific achievements while making the relationship between activities, implementation, and patient-relevant outcomes progressively more transparent. Its value would be demonstrated through repeated measurement, shared interpretation, and documented improvement, with attribution proportionate to the evidence and to the contributions of the wider regional community.