Questions & method

Is this a diagnostic tool?

No. RD-T1 is a case-finding overlay on an existing screening visit, and RD-T2 is a validation worksheet. Neither names a condition. Diagnosis happens only at a Centre of Excellence.

Why does nothing get uploaded?

Because a child's suspected rare disease is among the most sensitive data a family owns, and because the visit happens where there is no signal. Everything lives in the browser storage of the one device used, and the artifact that travels is paper.

What happens if the phone is lost?

The entries on it are gone. That is the deliberate trade for holding no central store. Export the CSV at the end of each round and keep the printed slips.

Who decided the routing thresholds?

The v0.1 thresholds (any critical flag, or two or more flags, routes to Priority A) are a draft proposal, not a validated rule. They are stated in the open so a clinical committee can move them.

Why ten items and not thirty?

The screening visit is short and the worker has other tasks in the same visit. Ten yes/no items with one spoken line each fits inside the RBSK contact without displacing it. A longer list gets filled in from memory afterwards, which is worse than a shorter list filled in honestly.

Does the tool ever override the clinician?

No. RD-T2 shows a suggested route and records the clinician's own decision. When the two differ, it asks for a reason and puts that reason in the export — an audit trail, not a gate.

• ·Final referral timeline for Priority A — 7 days is proposed, not agreed.
• ·Whether any cluster should be weighted rather than counted equally.
• ·Age-banding: whether items 3 and 7 apply below 12 months.
• ·Which first-line investigations are realistically available at CHC versus district level.
• ·Whether the tracker should carry a named accountable officer per row.

1. Phase 1 — content review

   Paediatric genetics and community medicine reviewers score each item for clarity and clinical face validity. Hindi lines back-translated independently.

2. Phase 2 — field feasibility

   Twenty screeners, two blocks, four weeks. Measures: time added per visit, item non-response, inter-rater agreement on the same child.

3. Phase 3 — yield and follow-through

   Referral completion rate at Tier 2, proportion of Priority A children reaching a DEIC within the agreed window, and confirmed diagnoses at Tier 3 against total screened.

Reviewers can send comments through the contact page.