Publications related to EuRRECa

Salma Rashid Ali, Jillian Bryce, Yllka Kodra, Domenica Taruscio, Luca Persani, Syed Faisal Ahmed. The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry. Int. J. Environ. Res. Public Health 18(22), 11968 (2021).

Ali SR, Bryce J, Smythe C, Hytiris M, Priego AL, Appelman-Dijkstra NM, Ahmed SF. Supporting international networks through platforms for standardised data collection-the European Registries for Rare Endocrine Conditions (EuRRECa) model. Endocrine. 2021 Jan 29:1–6.

Ali SR, Bryce J, Tan LE, Hiort O, Pereira AM, van den Akker ELT, Appelman-Dijkstra NM, Bertherat J, Cools M, Dekkers OM, Kodra Y, Persani L, Smyth A, Smythe C, Taruscio D, Ahmed SF. The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes. Int J Environ Res Public Health. 2020 Nov 25;17(23):8743.

de Vries F, Bruin M, Cersosimo A, van Beuzekom CN, Ahmed SF, Peeters RP, Biermasz NR, Hiort O, Pereira AM. An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria. Eur J Endocrinol. 2020;183:141-148.

Yllka Kodra, Jérôme Weinbach, Manuel Posada-de-la-Paz, Alessio Coi , S Lydie Lemonnier , David van Enckevort, Marco Roos, Annika Jacobsen, Ronald Cornet, S Faisal Ahmed, Virginie Bros-Facer, Veronica Popa, Marieke Van Meel, Daniel Renault, Rainald von Gizycki, Michele Santoro, Paul Landais, Paola Torreri, Claudio Carta, Deborah Mascalzoni, Sabina Gainotti, Estrella Lopez, Anna Ambrosini, Heimo Müller, Robert Reis, Fabrizio Bianchi, Yaffa R Rubinstein, Hanns Lochmüller, Domenica Taruscio. Recommendations for improving the quality of rare disease registries. Int. J. Environ. Res. Public Health Aug 2018.

S R Ali, J Bryce, M Cools, M Korbonits, J G Beun, D Taruscio, T Danne, M Dattani, O M Dekkers, A Linglart, I Netchine, A Nordenstrom, A Patocs, L Persani, N Reisch, A Smyth, Z Sumnik, W E Visser, O Hiort, A M Pereira, S F Ahmed. The current landscape of European registries for rare endocrine conditions. Eur J Endocrinol. Jan 2019.