FKRP Reference Public rare-disease knowledge base

A clearer path through rare-disease information.

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Methodology

How content is selected and published.

FKRP Reference summarizes selected public sources and links back to them so readers can check the original evidence, its date, and its limitations.

What the library includes

Guides introduce topics; paper summaries describe selected research; study records link to registries and other original sources. This is a curated starting point, not a systematic review or a complete evidence database.

Evidence handling

  • Substantive medical statements should be tied to published sources or formal guidance.
  • Paper summaries should distinguish findings, limitations, and practical relevance.
  • Where evidence is limited or evolving, that uncertainty should be stated directly.
  • A study record or sponsor update should not be read as proof of benefit, treatment approval, or personal eligibility.

Review model

Paper summaries, study records, Resources, and Therapeutic Pipeline include a source-check scope beside the review date. It states whether the check used an abstract, full text, registry record, or organizational source. An abstract-only check cannot establish details that require the full paper, and source verification is not independent clinical review.

Each mature page should display a review date and maintain enough structure to support repeatable update cycles. Core guides and glossary pages now follow a 6-month review target, paper summaries follow a quarterly review target, and trial or registry pages follow a monthly status-check target.

Material updates should be summarized on the public updates page, and review dates should only move forward after a real source check rather than a cosmetic edit.