Selection & verification

Scope of inclusion

The focus is practical CIPA / HSAN IV resources, professional guidance, dedicated organizations and continuing research teams. Broader CIP or HSAN material needs an explicit CIPA relationship; unresolved coverage remains a research lead.

Sources and editions

Record the publisher, title, material type, edition and review date. Prefer newer editions where appropriate; label historical surveys, older policy material and meeting agendas with their limits. Separate self-description from independent evidence.

Checking every external link

Search snippets, fetched text and successful HTTP responses do not establish safety. Links need real-browser and redirect inspection with independent corroboration. Compromised domains and pages containing known malicious links are withheld. Expired checks require review. Review records reflect the stated date and scope; they are not security certification or an endorsement of medical content.

Language notes and original material

The localized interfaces and short index descriptions are our own writing, not translated editions of third-party documents. Professional scope is retained. Full or excerpt translations requiring permission are not provided here.

What this site does not do

This site does not run literature searches, compile papers or write medical reviews; that needs expertise we do not have. What is indexed here is public material for patients and families, together with clinical reference chapters a family can bring to a clinician. For research literature, search PubMed (pubmed.ncbi.nlm.nih.gov) directly. We also give no diagnostic, medication or individual care advice.

How current this index is

This site is a set of static pages. There is no backend, no user editing and nothing updates automatically. It currently holds 31 records; research records and external links were checked up to 2026-09-21.

After that date, changes, moves or removals on the source sites are not detected automatically; they appear here only after re-checking and re-publishing. The research record date on each entry refers to when that entry was checked, not to when the material itself was medically revised.

The plan is one full review a year: every source link and record is re-checked, and the index is republished as a whole once it passes. This is a plan, not a guarantee — the site is maintained by one person in their spare time. If a round slips, the check dates on these pages simply stay where they were.