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The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes.
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. Ali SR, et al. Int J Environ Res Public Health. 2020 Nov 25;17(23):8743. doi: 10.3390/ijerph17238743. Int J Environ Res Public Health. 2020. PMID: 33255540 Free PMC article. Review.
The current landscape of European registries for rare endocrine conditions.
Ali SR, Bryce J, Cools M, Korbonits M, Beun JG, Taruscio D, Danne T, Dattani M, Dekkers OM, Linglart A, Netchine I, Nordenstrom A, Patocs A, Persani L, Reisch N, Smyth A, Sumnik Z, Visser WE, Hiort O, Pereira AM, Ahmed SF. Ali SR, et al. Eur J Endocrinol. 2019 Jan 1;180(1):89-98. doi: 10.1530/EJE-18-0861. Eur J Endocrinol. 2019. PMID: 30407922 Free PMC article.
Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.
Flück C, Nordenström A, Ahmed SF, Ali SR, Berra M, Hall J, Köhler B, Pasterski V, Robeva R, Schweizer K, Springer A, Westerveld P, Hiort O, Cools M. Flück C, et al. Among authors: ali sr. Eur J Endocrinol. 2019 Nov;181(5):545-564. doi: 10.1530/EJE-19-0363. Eur J Endocrinol. 2019. PMID: 31539875
Real-World Estimates of Adrenal Insufficiency-Related Adverse Events in Children With Congenital Adrenal Hyperplasia.
Ali SR, Bryce J, Haghpanahan H, Lewsey JD, Tan LE, Atapattu N, Birkebaek NH, Blankenstein O, Neumann U, Balsamo A, Ortolano R, Bonfig W, Claahsen-van der Grinten HL, Cools M, Costa EC, Darendeliler F, Poyrazoglu S, Elsedfy H, Finken MJJ, Fluck CE, Gevers E, Korbonits M, Guaragna-Filho G, Guran T, Guven A, Hannema SE, Higham C, Hughes IA, Tadokoro-Cuccaro R, Thankamony A, Iotova V, Krone NP, Krone R, Lichiardopol C, Luczay A, Mendonca BB, Bachega TASS, Miranda MC, Milenkovic T, Mohnike K, Nordenstrom A, Einaudi S, van der Kamp H, Vieites A, de Vries L, Ross RJM, Ahmed SF. Ali SR, et al. J Clin Endocrinol Metab. 2021 Jan 1;106(1):e192-e203. doi: 10.1210/clinem/dgaa694. J Clin Endocrinol Metab. 2021. PMID: 32995889 Free PMC article.
International practice of corticosteroid replacement therapy in congenital adrenal hyperplasia: data from the I-CAH registry.
Bacila I, Freeman N, Daniel E, Sandrk M, Bryce J, Ali SR, Yavas Abali Z, Atapattu N, Bachega TA, Balsamo A, Birkebæk N, Blankenstein O, Bonfig W, Cools M, Costa EC, Darendeliler F, Einaudi S, Elsedfy HH, Finken M, Gevers E, Claahsen-van der Grinten HL, Guran T, Güven A, Hannema SE, Higham CE, Iotova V, van der Kamp HJ, Korbonits M, Krone RE, Lichiardopol C, Luczay A, Mendonca BB, Milenkovic T, Miranda MC, Mohnike K, Neumann U, Ortolano R, Poyrazoglu S, Thankamony A, Tomlinson JW, Vieites A, de Vries L, Ahmed SF, Ross RJ, Krone NP. Bacila I, et al. Among authors: ali sr. Eur J Endocrinol. 2021 Apr;184(4):553-563. doi: 10.1530/EJE-20-1249. Eur J Endocrinol. 2021. PMID: 33460392 Free article.
I-DSD: The First 10 Years.
Lucas-Herald AK, Ali SR, McMillan C, Rodie ME, McMillan M, Bryce J, Ahmed SF. Lucas-Herald AK, et al. Among authors: ali sr. Horm Res Paediatr. 2023;96(2):238-246. doi: 10.1159/000524516. Epub 2022 Apr 7. Horm Res Paediatr. 2023. PMID: 35390801 Free article. Review.
229 results