Activity Report Further details of the activity of the Core Registry are available at eurreca.net/reports/
New Developments
Patient Reported Outcomes
The Brief Pain Inventory Short Form will be available soon.
What other PROMs should be added to the registries? The second round of this survey will be disseminated via email to respondents of the first round.
Condition Specific Modules
Active
Thyroid - To find out more please contact Edward Visser at w.e.visser@erasmusmc.nl
PHP/iPPSD - To find out more please contact Alex Ertl at diana-alexandra.ertl@meduniwien.ac.at
Pituitary Tumour - To find out more please contact Ana Priego at A.L.Priego_Zurita@lumc.nl
Achondroplasia - To find out more please contact Klaus Mohnike at Klaus.Mohnike@med.ovgu.de or EuRR_bone@lumc.nl
FD/MAS - To find out more please contact Natasha Appelman-Dijkstra at n.m.appelman-dijkstra@lumc.nl or EuRR_bone@lumc.nl
Osteogenesis Imperfecta - To find out more please contact Wolfgang Högler at Wolfgang.Hoegler@kepleruniklinikum.at or EuRR_bone@lumc.nl
In Development
Rare Obesity module - To find out more please contact Erica van den Akker at e.l.t.vandenakker@erasmusmc.nl
Rare Hypophosphataemia - To find out more please contact EuRR_bone@lumc.nl
Parathyroid Carcinoma - To find out more please contact Mariya Cherenko at m.cherenko@lumc.nl
If you would like to develop a condition specific module, please contact A.L.Priego_Zurita@lumc.nl
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