Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives

Autor: Leigh A. Stubbs, Andrew M. Ferry, Danielle Guffey, Christina Loccke, Erin Moriarty Wade, Pamela Pour, Kaveh Ardalan, Peter Chira, Ingrid M. Ganske, Daniel Glaser, Gloria Higgins, Nadia Luca, Katharine F. Moore, Vidya Sivaraman, Katie Stewart, Natalia Vasquez-Canizares, Raegan D. Hunt, Renata S. Maricevich, Kathryn S. Torok, Suzanne C. Li, Childhood Arthritis, Rheumatology Research Alliance (CARRA) Scleroderma Workgroup

Publikováno v: Pediatric Rheumatology Online Journal, Vol 21, Iss 1, Pp 1-12 (2023)

Abstract Background Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes.

Externí odkaz: https://doaj.org/article/9cd822c1c283406db45be5128b3ebcbb

Rapid Implementation of a Multidisciplinary COVID‐19 Cytokine Storm Syndrome Task Force

Autor: Bibi Ayesha, Anand Kumthekar, Ruchi Jain, Sneha Patel, Manish Ramesh, Denisa E Ferastraoaru, Golda Hudes, Merhunisa Karagic, Sheema Zafar, Rachel Bartash, Natalia Vasquez‐Canizares, Elizabeth Kitsis, Clement Tagoe, Dawn M. Wahezi, Tamar Rubinstein, Anna Broder

Publikováno v: ACR Open Rheumatology, Vol 3, Iss 3, Pp 133-137 (2021)

Objective Patients with coronavirus disease 2019 (COVID‐19) can progress to a state of unregulated inflammation called cytokine storm syndrome (CSS). We describe formation and operation of a COVID‐19 multidisciplinary consultation service that wa

Externí odkaz: https://doaj.org/article/e9a1875c005149e19f1c14fb0de0d76a

3233 Von Willebrand Factor is Localized in the Extravascular tissue of Patients with Juvenile Scleroderma

Autor: Natalia Vasquez Canizares, Morayma Reyes Gil, Dawn M. Wahezi, Beamon Agarwal, Tamar Rubinstein

Publikováno v: Journal of Clinical and Translational Science, Vol 3, Pp 158-159 (2019)

OBJECTIVES/SPECIFIC AIMS: To further explore the role of vWF in the pathogenesis of scleroderma by identifying its location within the tissue of sample biopsies obtained as part of routine diagnosis with the use of immuno-histochemical staining. METH

Externí odkaz: https://doaj.org/article/c2e10fdb81224c8fb411fa1730dc4b42

Rapid Implementation of a Multidisciplinary COVID‐19 Cytokine Storm Syndrome Task Force

Autor: Elizabeth A. Kitsis, Bibi Ayesha, Tamar B. Rubinstein, Clement E. Tagoe, Ruchi Jain, Manish Ramesh, Merhunisa Karagic, Golda Hudes, Dawn M. Wahezi, Anna Broder, Anand Kumthekar, Denisa Ferastraoaru, Natalia Vasquez-Canizares, Rachel Bartash, Sheema Zafar, Sneha Patel

Publikováno v: ACR Open Rheumatology
ACR Open Rheumatology, Vol 3, Iss 3, Pp 133-137 (2021)

Objective Patients with coronavirus disease 2019 (COVID-19) can progress to a state of unregulated inflammation called cytokine storm syndrome (CSS). We describe formation and operation of a COVID-19 multidisciplinary consultation service that was al

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::d3bb3c03b18dd795b08af8a08d73cdaa
https://doi.org/10.1002/acr2.11220

Gender differences in juvenile systemic sclerosis patients: Results from the international juvenile scleroderma inception cohort

Autor: Ivan Foeldvari, Jens Klotsche, Ozgur Kasapcopur, Amra Adrovic, Maria Teresa Terreri, Ana Paula Sakamoto, Valda Stanevicha, Jordi Anton, Brian M Feldman, Flavio Sztajnbok, Raju Khubchandani, Ekaterina Alexeeva, Maria Katsicas, Sujata Sawhney, Vanessa Smith, Simone Appenzeller, Tadej Avcin, Mikhail Kostik, Thomas Lehman, Edoardo Marrani, Dieneke Schonenberg-Meinema, Walter-Alberto Sifuentes-Giraldo, Natalia Vasquez-Canizares, Mahesh Janarthanan, Monika Moll, Dana Nemcova, Anjali Patwardhan, Maria Jose Santos, Cristina Battagliotti, Lillemor Berntson, Blanca Bica, Jürgen Brunner, Rolando Cimaz, Patricia Costa-Reis, Despina Eleftheriou, Liora Harel, Gerd Horneff, Sindhu R Johnson, Daniela Kaiser, Tilmann Kallinich, Dragana Lazarevic, Kirsten Minden, Susan Nielsen, Farzana Nuruzzaman, Siri Opsahl Hetlevik, Yosef Uziel, Nicola Helmus, Kathryn S Torok

Publikováno v: Journal of Scleroderma and Related Disorders. SAGE Publications Ltd
Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Terreri, M T, Sakamoto, A P, Stanevicha, V, Anton, J, Feldman, B M, Sztajnbok, F, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg-Meinema, D, Sifuentes-Giraldo, W-A, Vasquez-Canizares, N, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, M J, Battagliotti, C, Berntson, L, Bica, B, Brunner, J R, Cimaz, R, Costa-Reis, P, Eleftheriou, D, Harel, L, Horneff, G, Johnson, S R, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nielsen, S, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, Helmus, N & Torok, K S 2022, ' Gender differences in juvenile systemic sclerosis patients : Results from the international juvenile scleroderma inception cohort ', Journal of Scleroderma and Related Disorders . https://doi.org/10.1177/23971983221143244

Objective: To compare organ involvement and disease severity between male and female patients with juvenile onset systemic sclerosis. Methods: Demographics, organ involvement, laboratory evaluation, patient-reported outcomes and physician assessment

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::672cda4722ebaa7a5c93cddd436675b6
https://doi.org/10.1177/23971983221143244