OR27-02 An Exploration of Novel Clinical Benchmarks for Assessing the Practice of Gonadectomy in Conditions Affecting Sex Development - on Behalf of the I-DSD Consortium

por Lucas-Herald, Angela K, Bryce, Jillian, Cools, Martine, Ahmed, S Faisal
Publicado 2020

The Role of International Databases in Understanding the Aetiology and Consequences of Differences/Disorders of Sex Development

por Ali, Salma Rashid, Lucas-Herald, Angela, Bryce, Jillian, Ahmed, Syed Faisal
Publicado 2019

The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry

por Ali, Salma Rashid, Bryce, Jillian, Kodra, Yllka, Taruscio, Domenica, Persani, Luca, Ahmed, Syed Faisal
Publicado 2021

PMON191 Current Management of Acute Adrenal Insufficiency Related Adverse Events in Children with Congenital Adrenal Hyperplasia- Results of an International Survey of Specialist C...

por Ali, Salma Rashid, Bryce, JIllian, Krone, Nils, Claahsen-van der Grinten, Hedi, Ahmed, S Faisal
Publicado 2022

MON-170 Real World Estimates of Adrenal Insufficiency Related Adverse Events in Children with Congenital Adrenal Hyperplasia: On Behalf of the I-CAH Consortium

por Ali, Salma R, Bryce, Jillian, Haghpanahan, Houra, Lewsey, James D, Ahmed, S Faisal, Ross, Richard J M
Publicado 2020

Current models of care for disorders of sex development – results from an International survey of specialist centres

por Kyriakou, Andreas, Dessens, Arianne, Bryce, Jillian, Iotova, Violeta, Juul, Anders, Krawczynski, Maciej, Nordenskjöld, Agneta, Rozas, Marta, Sanders, Caroline, Hiort, Olaf, Ahmed, S. Faisal
Publicado 2016

Growth-Related Characteristics of Patients <18 Years of Age with Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency (21OHD): Real World Evidence from the I-CAH Registr...

por Farrar, Mallory, Ali, Salma Rashid, Bryce, Jillian, Baronio, Federico, Claahsen-van der Grinten, Hedi L, Bonfig, Walter, Yonan, Charles, Farber, Robert, Chan, Jean Lin, Ahmed, S Faisal
Publicado 2021

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

por Dessens, Arianne, Guaragna-Filho, Guilherme, Kyriakou, Andreas, Bryce, Jillian, Sanders, Caroline, Nordenskjöld, Agneta, Rozas, Marta, Iotova, Violeta, Ediati, Annastasia, Juul, Anders, Krawczynski, Maciej, Hiort, Olaf, Faisal Ahmed, S
Publicado 2017

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

por Ali, Salma R., Bryce, Jillian, Tan, Li En, Hiort, Olaf, Pereira, Alberto M., van den Akker, Erica L. T., Appelman-Dijkstra, Natasha M., Bertherat, Jerome, Cools, Martine, Dekkers, Olaf M., Kodra, Yllka, Persani, Luca, Smyth, Arelene, Smythe, Christopher, Taruscio, Domenica, Ahmed, S. Faisal
Publicado 2020

SUN-070 European Registries for Rare Endocrine Conditions (EuRRECa): Results from the Platform for E-reporting of Rare Endocrine Conditions (e-REC)

por Ali, Salma R, Bryce, Jillian, Cools, Martine, Danne, Thomas, Dattani, Mehul T, Dekkers, Olaf M, Hiort, Olaf, Linglart, Agnes, Netchine, Irene, Nordenstrom, Anna, Patocs, Attila, Pereira, Alberto M, Persani, Luca, Reisch, Nicole, Smyth, Arlene, Sumnik, Zdenek, Taruscio, Domenica, Visser, W Edward, Ahmed, S Faisal
Publicado 2020

Novel Associations in Disorders of Sex Development: Findings From the I-DSD Registry

por Cox, Kathryn, Bryce, Jillian, Jiang, Jipu, Rodie, Martina, Sinnott, Richard, Alkhawari, Mona, Arlt, Wiebke, Audi, Laura, Balsamo, Antonio, Bertelloni, Silvano, Cools, Martine, Darendeliler, Feyza, Drop, Stenvert, Ellaithi, Mona, Guran, Tulay, Hiort, Olaf, Holterhus, Paul-Martin, Hughes, Ieuan, Krone, Nils, Lisa, Lidka, Morel, Yves, Soder, Olle, Wieacker, Peter, Ahmed, S. Faisal
Publicado 2014

Outcome of COVID-19 infections in patients with adrenal insufficiency and excess

por Nowotny, Hanna F, Bryce, Jillian, Ali, Salma R, Giordano, Roberta, Baronio, Federico, Chifu, Irina, Tschaidse, Lea, Cools, Martine, van den Akker, Erica LT, Falhammar, Henrik, Appelman-Dijkstra, Natasha M, Persani, Luca, Beccuti, Guglielmo, Ross, Ian L, Grozinsky-Glasberg, Simona, Pereira, Alberto M, Husebye, Eystein S, Hahner, Stefanie, Faisal Ahmed, S, Reisch, Nicole
Publicado 2023

Long-term cardiometabolic morbidity in young adults with classic 21-hydroxylase deficiency congenital adrenal hyperplasia

por Righi, Beatrice, Ali, Salma R., Bryce, Jillian, Tomlinson, Jeremy W., Bonfig, Walter, Baronio, Federico, Costa, Eduardo C., Guaragna-Filho, Guilherme, T’Sjoen, Guy, Cools, Martine, Markosyan, Renata, Bachega, Tania A. S. S., Miranda, Mirela C., Iotova, Violeta, Falhammar, Henrik, Ceccato, Filippo, Stancampiano, Marianna R., Russo, Gianni, Daniel, Eleni, Auchus, Richard J., Ross, Richard J., Ahmed, S. Faisal
Publicado 2023

Treatment of congenital adrenal hyperplasia in children aged 0–3 years: a retrospective multicenter analysis of salt supplementation, glucocorticoid and mineralocorticoid medicatio...

por Neumann, Uta, van der Linde, Annelieke, Krone, Ruth E, Krone, Nils P, Güven, Ayla, Güran, Tülay, Elsedfy, Heba, Poyrazoglu, Sukran, Darendeliler, Feyza, Bachega, Tania A S S, Balsamo, Antonio, Hannema, Sabine E, Birkebaek, Niels, Vieites, Ana, Thankamony, Ajay, Cools, Martine, Milenkovic, Tatjana, Bonfig, Walter, Costa, Eduardo Correa, Atapattu, Navoda, de Vries, Liat, Guaragna-Filho, Guilherme, Korbonits, Marta, Mohnike, Klaus, Bryce, Jillian, Ahmed, S Faisal, Voet, Bernard, Blankenstein, Oliver, Claahsen-van der Grinten, Hedi L
Publicado 2022

Predictors of surgical complications in boys with hypospadias: data from an international registry

por Scougall, Kathryn, Bryce, Jillian, Baronio, Federico, Boal, Rachel L, Castera, Jose Roberto, Castro, Sebastián, Cheetham, Tim, Costa, Eduardo Corrêa, Darendeliler, Feyza, Davies, Justin H, Dirlewanger, Mirjam, Gazdagh, Gabriella, Globa, Evgenia, Guerra-Junior, Gil, Guran, Tulay, Herrmann, Gloria, Holterhus, Paul-Martin, Akgül, Ahsen Karagözlü, Markosyan, Renata, McElreavey, Kenneth, Miranda, Marcio Lopes, Nordenstrom, Anna, O’Toole, Stuart, Poyrazoglu, Sukran, Russo, Gianni, Schwitzgebel, Valerie, Stancampiano, Marianna, Steigert, Michael, Ahmed, S Faisal, Lucas-Herald, Angela K
Publicado 2023

Analysis of therapy monitoring in the International Congenital Adrenal Hyperplasia Registry

por Lawrence, Neil, Bacila, Irina, Dawson, Jeremy, Bryce, Jillian, Ali, Salma R., van den Akker, Erica L. T., Bachega, Tânia A. S. S., Baronio, Federico, Birkebæk, Niels H., Bonfig, Walter, van der Grinten, Hedi C., Costa, Eduardo C., de Vries, Liat, Elsedfy, Heba, Güven, Ayla, Hannema, Sabine, Iotova, Violeta, van der Kamp, Hetty J., Clemente, María, Lichiardopol, Corina R., Milenkovic, Tatjana, Neumann, Uta, Nordenström, Ana, Poyrazoğlu, Şukran, Probst‐Scheidegger, Ursina, De Sanctis, Luisa, Tadokoro‐Cuccaro, Rieko, Thankamony, Ajay, Vieites, Ana, Yavaş, Zehra, Faisal Ahmed, Syed, Krone, Nils
Publicado 2022

Real-World Estimates of Adrenal Insufficiency–Related Adverse Events in Children With Congenital Adrenal Hyperplasia

por Ali, Salma R, Bryce, Jillian, Haghpanahan, Houra, Lewsey, James D, Tan, Li En, Atapattu, Navoda, Birkebaek, Niels H, Blankenstein, Oliver, Neumann, Uta, Balsamo, Antonio, Ortolano, Rita, Bonfig, Walter, Claahsen-van der Grinten, Hedi L, Cools, Martine, Costa, Eduardo Correa, Darendeliler, Feyza, Poyrazoglu, Sukran, Elsedfy, Heba, Finken, Martijn J J, Fluck, Christa E, Gevers, Evelien, Korbonits, Márta, Guaragna-Filho, Guilherme, Guran, Tulay, Guven, Ayla, Hannema, Sabine E, Higham, Claire, Hughes, Ieuan A, Tadokoro-Cuccaro, Rieko, Thankamony, Ajay, Iotova, Violeta, Krone, Nils P, Krone, Ruth, Lichiardopol, Corina, Luczay, Andrea, Mendonca, Berenice B, Bachega, Tania A S S, Miranda, Mirela C, Milenkovic, Tatjana, Mohnike, Klaus, Nordenstrom, Anna, Einaudi, Silvia, van der Kamp, Hetty, Vieites, Ana, de Vries, Liat, Ross, Richard J M, Ahmed, S Faisal
Publicado 2020