Meeting report: patient and caregiver recommendations for a mobile health application for paediatric systemic lupus erythematosus

Autor: Laura Eve Schanberg, Rachel L Randell, Lisa B Hightow-Weidman, Katrina Guardino, Malaya Gaerlan, Caitlan S Pinotti, Kimberly R Burnett, Deborah Kofoed

Publikováno v: Lupus Science and Medicine, Vol 11, Iss 2 (2024)

Paediatric systemic lupus erythematosus (pSLE) management and research could be enhanced by a mobile health application (app); however, no app designed for pSLE is currently available. A development and design committee comprising of patients, parent

Externí odkaz: https://doaj.org/article/47c6cd3cd9b541e8ae3dc91493127c8b

Delivering clinical trials at home: protocol, design and implementation of a direct-to-family paediatric lupus trial

Autor: Laura E Schanberg, S Canna, A Grom, E Mellins, A Brown, S Jones, E Baker, A Kemp, T Davis, S Jackson, K Jones, T Mason, A Hanson, J Jones, J Cooper, T Lee, J Chang, M Holland, S Joshi, L Lim, A Murphy, K Moore, B ferreira, S Li, P Lee, K Abulaban, R Agbayani, S Akoghlanian, E Anderson, L Barillas-Arias, K Baszis, M Becker, H Bell-Brunson, H Benham, S Benseler, T Beukelman, H Brunner, H Bukulmez, L Cerracchio, E Chalom, K Chundru, J Dean, F Dedeoglu, V Dempsey, J Drew, B Feldman, P Ferguson, C Fleming, L Franco, I Goh, D Goldsmith, B Gottlieb, T Graham, T Griffin, M Hance, K Hickey, M Hollander, J Hsu, A Huber, C Hung, A Huttenlocher, L Imundo, C Inman, J Jaquith, L Jung, D Kingsbury, K Klein, M Klein-Gitelman, S Kramer, S Lapidus, D Latham, B Malla, M Malloy, A Martyniuk, K McConnell, D McCurdy, C McMullen-Jackson, L Moorthy, E Muscal, S Kim, L Favier, S Morgan, A Jackson, L Marques, Stephen J Balevic, K Hayward, J Nicholas, D Lovell, J Harris, E Lawson, C Moss, N George, A Cooper, Rachel L Randell, M Adams, S Cooper, M Miller, C Black, M Mitchell, F De Benedetti, M Fox, K Kaufman, A Merritt, J Fuller, M Fitzgerald, A Davis, C Davis, L Henderson, S Mohan, Y Kimura, L Harel, R Laxer, K McCarthy, I Ferguson, E McCormick, A Hay, M Guzman, E Fox, P Hill, S McGuire, J Lam, J Boland, S Ballinger, E MENDOZA, J NOCTON, N Johnson, S Bowman, M Ibarra, S Hong, M Guevara, K James, A Adams, B DONALDSON, C Kremer, L Cannon, R Nicolai, M Freeman, D Levy, K Gerhold, A Insalaco, W Bernal, E Kessler, C Lin, M Lerman, T Hahn, Lindsay Singler, Anthony Cunningham, Michael Cohen-Wolkowiez, Christoph P Hornik, N Abel, J Aiello, C Alejandro, E Allenspach, R Alperin, M Alpizar, G Amarilyo, W Ambler, S Ardoin, S Armendariz, I Balboni, S Balevic, L Ballenger, N Balmuri, F Barbar-Smiley, M Basiaga, E Beltz, T Bigley, B Binstadt, M Blakley, J Bohnsack, A Boneparth, C Bracaglia, E Brooks, M Brothers, M Buckley, D Bullock, B Cameron, P Carper, V Cartwright, E Cassidy, A Chang-Hoftman, V Chauhan, P Chira, T Chinn, H Clairman, D Co, A Confair, H Conlon, R Connor, C Correll, R Corvalan, D Costanzo, R Cron, L Curiel-Duran, T Curington, M Curry, A Dalrymple, D De Ranieri, M De Guzman, N Delnay, E DeSantis, T Dickson, J Dingle, E Dorsey, S Dover, J Dowling, K Driest, Q Du, K Duarte, D Durkee, E Duverger, J Dvergsten, A Eberhard, M Eckert, K Ede, B Edelheit, C Edens, Y Edgerly, M Elder, B Ervin, S Fadrhonc, C Failing, D Fair, M Falcon, S Federici, J Fennell, R Ferrucho, K Fields, T Finkel, O Flynn, L Fogel, K Fritz, S Froese, R Fuhlbrigge, D Gerstbacher, M Gilbert, M Gillispie-Taylor, E Giverc, C Godiwala, H Goheer, E Gotschlich, A Gotte, C Gracia, S Grevich, J Griswold, P Guittar, M Hager, O Halyabar, E Hammelev, S Haro, O Harry, E Hartigan, J Hausmann, J Heiart, K Hekl, M Henrickson, A Hersh, S Hillyer, L Hiraki, M Hiskey, P Hobday, C Hoffart, M Horwitz, J Huggins, J HuiYuen, J Huntington, G Janow, S Jared, C Justice, A Justiniano, N Karan, U Khalsa, B Kienzle, M Kitcharoensakkul, T Klausmeier, B Kompelien, A Kosikowski, L Kovalick, J Kracker, J Lai, B Lang, B Lapin, A Lasky, L Lentini, S Lieberman, N Ling, M Lingis, M Lo, D Lowman, N Luca, S Lvovich, C Madison, J Madison, S Magni Manzoni, J Maller, M Mannion, C Manos, S Mathus, L McAllister, P McCurdy Stokes, I McHale, A McMonagle, E Meidan, R Mercado, L Michalowski, P Miettunen, D Milojevic, E Mirizio, E Misajon, R Modica, E Morgan Dewitt, T Moussa, V Mruk, R Nadler, B Nahal, K Nanda, N Nasah, L Nassi, S Nativ, M Natter, J Neely, B Nelson, L Newhall, L Ng, P Nigrovic, B Nolan, E Oberle, B Obispo

Publikováno v: Lupus Science and Medicine, Vol 8, Iss 1 (2021)

Introduction Direct-to-family clinical trials efficiently provide data while reducing the participation burden for children and their families. Although these trials can offer significant advantages over traditional clinical trials, the process of de

Externí odkaz: https://doaj.org/article/d5bbec628c144a6fa00bd7aea695791b

Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases

Autor: Christina K Zigler, Rachel L Randell, Bryce B. Reeve

Publikováno v: Rheumatic Disease Clinics of North America. 48:15-29

For children with pediatric rheumatic diseases (PRDs), the inclusion of patient-reported outcomes (PROs) is critical to inform decision making in health care delivery and research settings. PROs are direct reports from a child on their health status,

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::dc5efef4f2b0927d3c4c7a2086e7aacb
https://doi.org/10.1016/j.rdc.2021.09.008

An Innovative Approach to Building an Effective and Efficient Pediatric Trial Network

Autor: Rachel L, Randell, Daniel K, Benjamin, Rachel G, Greenberg

Publikováno v: Hospital Pediatrics. 12:e309-e311

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8378635108d189e722904b5fc60704bb
https://doi.org/10.1542/hpeds.2022-006811

1119 Recruitment and enrollment into a direct-to-family pediatric lupus trial

Autor: Lindsay Singler, Stephen J. Balevic, Michael Cohen-Wolkowiez, Rachel L Randell, Laura E. Schanberg, Christoph P. Hornik, Anthony Cunningham

Publikováno v: Lupus Science and Medicine, Vol 8, Iss Suppl 2 (2021)

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::33c23db01bbcb12f9fc84eab73d5c9e1
https://doi.org/10.1136/lupus-2021-lupus21century.62