Register 2 · Registries updated Sep 2026

Registries recording limb difference: what already exists.

Before building a registry owned by families, DysNet mapped the registries that already record our conditions. This register lists them, says how each one relates to the ORPHAcodes on this site, and checks the French population registries against the surveillance report of Santé publique France. The coverage of each French registry is drawn on the landing-page map. The DysNet initiative itself is described on the registry page.

Registries on Orphanet

72 registries already record our conditions.

Orphanet’s directory of patient registries, queried for each of the 23 ORPHAcodes on this site (harvested 2026-09-11). Two kinds of match: registries coded for one of our conditions, which are the 21 congenital-anomaly registries of the EUROCAT network and their national equivalents, and registries that reach our conditions only by classification, as national rare-disease or rare-bone registries. None of them is dedicated to limb differences; this is the landscape the DysNet initiative sets out to complement, not to duplicate.

Source: Orphanet, Research and trials, Patient registries, per ORPHAcode. “Coded for” = the registry declares the condition itself (22 registries); “by classification” = Orphanet lists the registry under a broader group that includes the condition. Registry names as published by Orphanet, with the local name where given.

The French population registries, checked against Santé publique France

Santé publique France’s surveillance report for 2019-2021 (published July 2026) lists seven population-based registries of congenital anomalies. Together they covered 16.4% of French births in 2019-2021; the report projects about 23.6% once the Nouvelle-Aquitaine registry is fully deployed (an objective, not a measured figure). Six are on Orphanet; the seventh, ATENA in Nouvelle-Aquitaine, is not yet listed there and is added here from the report. The same report describes the European network these registries feed: EUROCAT network: 43 population-based registries in 21 European countries, about 1.5 million births a year (report, box 1).

Source: Santé publique France, Surveillance épidémiologique des anomalies congénitales en France à partir des registres populationnels : période 2019-2021 (July 2026), Table 1 and directory of registries. * Estimate of the births the registry would have covered had it been operating in 2019-2021. Live births and stillbirths. Download the registries data (JSON, CC BY 4.0).