Updates
This page is the public changelog and maintenance model for FKRP Reference. It explains what changed, how often major content types are reviewed, and how new work moves into the backlog.
Add this feed address to your RSS reader to see new site changes. It is a publication changelog, not a clinical alert service or a complete stream of research news.
Recent updates
Eight neutral paper summaries, three study records, research-participation and emergency-preparation guides, four blank printable preparation tools, and a dated source audit were added. Supplement, steroid, dosing, laboratory-target, activity-restriction, and emergency-treatment material was not published. Specialist review gates remain visible in the source audit.
A start-here reading path, printable appointment conversation checklist, reusable sharing text, correction route, and RSS feed are available. About now states the limits of recorded reviews. These are website improvements; clinical content review dates have not changed.
Trial eligibility and site lists, selected paper summaries, and support resources were checked and corrected. Source-check scope is now visible beside review dates. Thirteen checks are complete within their stated scope; the 2003 Poppe paper retains a review warning because its published correction could not be read. Source verification is not independent clinical review.
Core FKRP guides, audience entry points, and the initial public reference architecture went live.
Paper summaries, trial and registry tracking, and structured evidence detail pages were added to the public site.
Shared taxonomy, glossary pages, site-wide search, related-content modules, metadata updates, and automated validation checks were added.
Operating model
Review cadence
Each major content type has an expected refresh window instead of ad hoc updates.
Source-first updates
Major revisions should start from published sources, registry records, or formal guidance, not memory alone.
Public changelog
Material updates are summarized here so changes are visible instead of silent.
Backlog triage
Accuracy and staleness risks are prioritized ahead of expansion or growth experiments.
Review cadence
Formal review every 6 months, with earlier updates when major terminology, care framing, or guidance changes.
Quarterly review, or sooner if a paper changes how phenotype, monitoring, or evidence limitations should be described.
Monthly status check against the source record, with same-week updates when recruitment or status materially changes.
Review every 6 months and whenever taxonomy, search behavior, or naming conventions materially shift.
Backlog process
P1 Maintain accuracy
Review-due pages, trial-status changes, broken links, and any risk of outdated or misleading evidence.
P2 Expand coverage
New papers, new glossary terms, additional resources, and deeper summaries that fit the current structure.
P3 Growth work
Multilingual support, contributor workflows, community submissions, and analytics-informed UX improvements.