Rare Obesity

Rare Obesity

The Rare Obesity Working Group developed a dataset based on the information gathered by the surveys and the MTG on Growth and Obesity expertise. The dataset, built in the Core Registry platform as an online module, is available since November 2022 and open to all reporters registering cases of syndromic and non-syndromic genetic obesity both in children and adults.

Want to start using the module? Get access to the Core Registry and read the instructions (, 1 MB) on how to use the module.

If you have questions or interest in joining the working group, please contact us on: registries@lumc.nl.

The full data dictionary can be downloaded here.

After entering the patient with the diagnosis of any kind of rare obesity (syndromic and non-syndromic), including Prader-Willi Syndrome, Prader-Willi-like syndrome, Rubenstein Taybi Syndrome, Temple Syndrome, Beckwith-Wiedemann Syndrome and Pseudohypoparathyroidism with Albright hereditary osteodystrophy in the Core Registry, the Rare obesity module appears automatically and is ready to use.

The module collects information on

  • Anthropometry;
  • Parental data;
  • Genetics;
  • Clinical phenotype (including endocrine manifestations);
  • Comorbidities;
  • Medical and other treatment.