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2. Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Author

Tong, Allison, Manns, Braden, Wang, Angela Yee Moon, Hemmelgarn, Brenda, Wheeler, David C, Gill, John, Tugwell, Peter, Pecoits-Filho, Robert, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang C, Levin, Adeera, Thompson, Aliza, Perkovic, Vlado, Ju, Angela, Gutman, Talia, Bernier-Jean, Amelie, Viecelli, Andrea K, O’Lone, Emma, Shen, Jenny, Josephson, Michelle A, Cho, Yeoungjee, Johnson, David W, Sautenet, Bénédicte, Tonelli, Marcello, Craig, Jonathan C, Investigators, SONG Implementation Workshop, Craig, Jonathan, Wang, Angela, Wheeler, David, Pecoits-Filho, Roberto, van Biesen, Wim, Winkelmayer, Wolfgang, Sinha, Aditi, Ong, Albert, Denny, Alexis, Dart, Allison, Eddy, Allison, Kelly, Amy, Viecelli, Andrea, Davenport, Andrew, Narva, Andrew, Sharma, Ankit, Warrens, Anthony, Chapman, Arlene, Teixeira-Pinto, Armando, Kelly, Ayano, Murphy, Barbara, Sautenet, Benedicte, Padilla, Benita, Canaud, Bernard, Pullin, Brian, Schiller, Brigitte, Robinson, Bruce, Hanson, Camilla, Hawley, Carmel, Logeman, Charlotte, Lok, Charmaine, Wanner, Christoph, Herzog, Chuck, Rutherford, Claudia, Ahn, Curie, Sumpton, Daniel, Rosenbloom, David, Harris, David, Baron, David, Johnson, David, White, David, Gipson, Debbie, Fouque, Denis, Eilers, Denise, Bockenhauer, Detlef, O'Donoghue, Donal, Chen, Dongping, Dunning, Dyke, Brown, Edwina, Bavlovlenkov, Elena, Mannon, Elinor, Poggio, Emilo, O'Lone, Emma, Chemla, Eric, Dobbels, Fabienne, Zannad, Faiez, Caskey, Fergus, Tentori, Francesca, Hurst, Frank, Schaefer, Franz, and Wong, Germaine

Subjects
Clinical Trials and Supportive Activities, Kidney Disease, Clinical Research, Comparative Effectiveness Research, Renal and urogenital, Generic health relevance, Good Health and Well Being, Consensus, Endpoint Determination, Humans, Randomized Controlled Trials as Topic, Renal Insufficiency, Chronic, Research Design, Stakeholder Participation, Treatment Outcome, core outcome sets, implementation, kidney disease, outcomes, patient-centered care, trials, SONG Implementation Workshop Investigators, Clinical Sciences, Urology & Nephrology
Abstract

There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes.

Published
2018

3. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Guha, Abhjit, Solarin, Adaobi, Sinha, Aditi, Platona, Adriana, Hamilton, Alexander, Woods-Barnard, Alice, Neu, Alicia, Tong, Allison, Dart, Allison, Eddy, Allison, Karathanas, Alyssa, Baumgart, Amanda, Fielding, Amelia, LePage, Amelia, Bernier-Jean, Amelie, Kelly, Amy, Teixeira, Ana, Viecelli, Andrea, Matus, Andrea, Narva, Andrew, Ju, Angela, Wang, Angela Yee-Moon, Sharma, Ankit, Fielding, Anna, Francis, Anna, Meza, Anthony, Fielding, Aria, Teixeira-Pinto, Armando, Bagga, Arvind, Jankauskienė, Augustina, Kelly, Ayano, Gillespie, Barbara, Sautenet, Benedicte, Vogt, Beth, Foster, Bethany, Warady, Bradley, Dixon, Bradley, Manns, Braden, Hemmelgarn, Brenda, Bscardark, Brittney, Romeo, Brooklyn, Hanson, Camilla, Meza, Carlos, Brockett, Carter, Guha, Chandana, Prestidge, Chanel, Logeman, Charlotte, Green, Charmaine, Sanchez-Kazi, Cheryl, Perkins, Christy, Schmitt, Claus Peter, Fielding, Craig, Settee, Craig, Sumpton, Daniel, Meza, Daniel, Karathanas, Darien, Harris, David, Wheeler, David, Hooper, David, Gipson, Debbie, Geary, Denis, Bockenhauer, Detlef, Haffner, Dieter, Mekahli, Djalila, Drozdz, Dorota, Romeo, Ed, Ku, Elaine, Urbina, Elaine, Levtchenko, Elena, Balovlenkov, Elena, Hodson, Elisabeth, Morales, Emily, O'Lone, Emma, Machuca, Emma, Carlton, Emmah, Au, Eric, Olver, Erin, Morales, Estefania, Mirza, Fatima, Mackie, Fiona, Tentori, Francesca, Schaefer, Franz, Higgins, Gail, Deschenes, Georges, Plunkett, Georgia, Yoder, Gerilyn, Wong, Germaine, Morales, Giselle, Germino, Greg, Desmond, Hailey, Perkins, Hayley, Mitchell-Smith, Harrison, Coolican, Helen, Xu, Hong, Yap, Hui-Kim, Anochie, Ifeoma, Ha, Il-Soo, Davis, Ira, Liu, Isaac, Samaniego, Israel, Groothoff, Jaap, Machuca, Jaime, Machuca, James, Kerklaan, Jasmijn, Brockett, Jeff, Norton, Jenna, Shen, Jenny, Goebel, Jens, Rao, Jia, Machuca, Jimmy, Mitchell-Smith, Jo, Watson, Jo, Gill, John, Craig, Jonathan, Flynn, Joseph T., Kausman, Joshua, Samuels, Joshua, Bacchetta, Justine, Yoder, Kaleb, Manera, Karine, Azukaitis, Karolis, Twombley, Katherine, McMichael, Kelly-Ann, Ishikura, Kenji, Romeo, Kennedy, Settee, Kevin, Van, Kim Linh, McMichael, Lachlan, Trinh, Lany, Greenbaum, Larry, Sanchez, Laura, Fielding, Leo, Rees, Lesley, Lippincott, Leslie, Mejia-Saldivar, Levi, Saldivar, Lidia, Guay-Woodford, Lisa, Samaniego, Lizett, Hamiwka, Lorraine, Bell, Lorraine, Dunn, Louese, Barry, Lucinda, Macauley, Luke, Holmes, Luke, Karathanas, Madelynn, Mitchell-Smith, Madison, Walker, Mandy, Benavides, Manuel, Tonelli, Marcello, Ferris, Maria, Vivarelli, Marina, Wolfenden, Mark, Howell, Martin, Christian, Martin, Schreiber, Martin, Moxey-Mims, Marva, Leonard, Mary, Karathanas, Matthew, Pearl, Meghan, Natatmadja, Melissa, Brockett, Melissa, Bonilla-Felix, Melvin, Atkinson, Meredith, Zappitelli, Michael, Baum, Michel, Rheault, Michelle, McCulloch, Mignon, Matsuda-Abedini, Mina, Michael, Mini, Khan, Mohammad, Salih, Mohammad, Carlton, Mycah Ann, Benador, Nadine, Plunkett, Ngairre, Webb, Nick, Scholes-Robertson, Nicki, Larkins, Nicolas, Evangelidis, Nicole, Yoder, Nigel, Meza, Norma, Olver, Paige, Carlton, Paiyton, Brophy, Patrick, Tugwell, Peter, Cochat, Pierre, Mehrotra, Rajnish, Wolfenden, Raphael, Gbadegesin, Rasheed, Benavides, Raymond, Johnson, Rebecca, Morales, Ricardo, Jr., McGee, Richard, Fish, Richard, Gardos, Robert, Pecoits-Filho, Roberto, Vargas, Rocio, Saldivar, Rodolfo, Coppo, Rosanna, Shroff, Rukshana, Raina, Rupesh, Youssouf, Sajeda, Crowe, Sally, Anumudu, Samaya, Chan, Samuel, Baldacchino, Sarah, Wenderfer, Scott, Wolfenden, Sebastian, Carlton, Selah, Sutton, Shanna, Murphy, Shannon, Teo, Sharon, Salih, Sheyma, Sahney, Shobha, Carlton, Silas, Carter, Simon, Pearson, Simone, Khan, Simra, Wilson, Skyla, Sharma, Sonia, Alexander, Stephen, Marks, Stephen, Cornish, Stephen, Goldstein, Stuart, Samuel, Susan, Furth, Susan, Mendley, Susan, Lippincott, Susan, Charles, Symone, Gutman, Talia, Mitchell-Smith, Terri, Harris, Tess, Vetter, Thorsten, Carlton, Tiffany, Carlton, Timothy, Querfeld, Uwe, Saglimbene, Valeria, Charles, Virginia, van Biesen, Wim, Winkelmayer, Wolfgang, Machuca, Yenissey, Cho, Yeoungjee, Salih, Yusuf, Anh, Yo Han, Perkins, Zachary, Salih, Zeynab, Hanson, Camilla S., Craig, Jonathan C., Eddy, Allison A., Gipson, Debbie S., Webb, Nicholas J.A., Alexander, Stephen I., Furth, Susan L., Viecelli, Andrea K., Au, Eric H., Shen, Jenny I., Manera, Karine E., Carter, Simon A., and Walker, Amanda

Published
2020
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4. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Hanson, Camilla S., primary, Craig, Jonathan C., additional, Logeman, Charlotte, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A., additional, Guha, Chandana, additional, Gipson, Debbie S., additional, Bockenhauer, Detlef, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Webb, Nicholas J.A., additional, Alexander, Stephen I., additional, Furth, Susan L., additional, Samuel, Susan, additional, Neu, Alicia, additional, Viecelli, Andrea K., additional, Ju, Angela, additional, Sharma, Ankit, additional, Au, Eric H., additional, Desmond, Hailey, additional, Shen, Jenny I., additional, Manera, Karine E., additional, Azukaitis, Karolis, additional, Dunn, Louese, additional, Carter, Simon A., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Walker, Amanda, additional, Francis, Anna, additional, Sanchez-Kazi, Cheryl, additional, Kausman, Joshua, additional, Pearl, Meghan, additional, Benador, Nadine, additional, Sahney, Shobha, additional, Tong, Allison, additional, Guha, Abhjit, additional, Solarin, Adaobi, additional, Platona, Adriana, additional, Hamilton, Alexander, additional, Woods-Barnard, Alice, additional, Eddy, Allison, additional, Karathanas, Alyssa, additional, Baumgart, Amanda, additional, Fielding, Amelia, additional, LePage, Amelia, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Teixeira, Ana, additional, Viecelli, Andrea, additional, Matus, Andrea, additional, Narva, Andrew, additional, Wang, Angela Yee-Moon, additional, Fielding, Anna, additional, Meza, Anthony, additional, Fielding, Aria, additional, Teixeira-Pinto, Armando, additional, Bagga, Arvind, additional, Jankauskienė, Augustina, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Sautenet, Benedicte, additional, Vogt, Beth, additional, Foster, Bethany, additional, Warady, Bradley, additional, Dixon, Bradley, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Bscardark, Brittney, additional, Romeo, Brooklyn, additional, Hanson, Camilla, additional, Meza, Carlos, additional, Brockett, Carter, additional, Prestidge, Chanel, additional, Green, Charmaine, additional, Perkins, Christy, additional, Schmitt, Claus Peter, additional, Fielding, Craig, additional, Settee, Craig, additional, Sumpton, Daniel, additional, Meza, Daniel, additional, Karathanas, Darien, additional, Harris, David, additional, Wheeler, David, additional, Hooper, David, additional, Gipson, Debbie, additional, Geary, Denis, additional, Haffner, Dieter, additional, Mekahli, Djalila, additional, Drozdz, Dorota, additional, Romeo, Ed, additional, Ku, Elaine, additional, Urbina, Elaine, additional, Levtchenko, Elena, additional, Balovlenkov, Elena, additional, Hodson, Elisabeth, additional, Morales, Emily, additional, O'Lone, Emma, additional, Machuca, Emma, additional, Carlton, Emmah, additional, Au, Eric, additional, Olver, Erin, additional, Morales, Estefania, additional, Mirza, Fatima, additional, Mackie, Fiona, additional, Tentori, Francesca, additional, Schaefer, Franz, additional, Higgins, Gail, additional, Deschenes, Georges, additional, Plunkett, Georgia, additional, Yoder, Gerilyn, additional, Wong, Germaine, additional, Morales, Giselle, additional, Germino, Greg, additional, Perkins, Hayley, additional, Mitchell-Smith, Harrison, additional, Coolican, Helen, additional, Xu, Hong, additional, Anochie, Ifeoma, additional, Ha, Il-Soo, additional, Davis, Ira, additional, Liu, Isaac, additional, Samaniego, Israel, additional, Machuca, Jaime, additional, Machuca, James, additional, Kerklaan, Jasmijn, additional, Brockett, Jeff, additional, Norton, Jenna, additional, Shen, Jenny, additional, Goebel, Jens, additional, Rao, Jia, additional, Machuca, Jimmy, additional, Mitchell-Smith, Jo, additional, Watson, Jo, additional, Gill, John, additional, Craig, Jonathan, additional, Flynn, Joseph T., additional, Samuels, Joshua, additional, Bacchetta, Justine, additional, Yoder, Kaleb, additional, Manera, Karine, additional, Twombley, Katherine, additional, McMichael, Kelly-Ann, additional, Ishikura, Kenji, additional, Romeo, Kennedy, additional, Settee, Kevin, additional, Van, Kim Linh, additional, McMichael, Lachlan, additional, Trinh, Lany, additional, Greenbaum, Larry, additional, Sanchez, Laura, additional, Fielding, Leo, additional, Rees, Lesley, additional, Lippincott, Leslie, additional, Mejia-Saldivar, Levi, additional, Saldivar, Lidia, additional, Guay-Woodford, Lisa, additional, Samaniego, Lizett, additional, Hamiwka, Lorraine, additional, Bell, Lorraine, additional, Barry, Lucinda, additional, Macauley, Luke, additional, Holmes, Luke, additional, Karathanas, Madelynn, additional, Mitchell-Smith, Madison, additional, Walker, Mandy, additional, Benavides, Manuel, additional, Tonelli, Marcello, additional, Ferris, Maria, additional, Vivarelli, Marina, additional, Wolfenden, Mark, additional, Howell, Martin, additional, Christian, Martin, additional, Schreiber, Martin, additional, Moxey-Mims, Marva, additional, Leonard, Mary, additional, Karathanas, Matthew, additional, Natatmadja, Melissa, additional, Brockett, Melissa, additional, Bonilla-Felix, Melvin, additional, Atkinson, Meredith, additional, Baum, Michel, additional, Rheault, Michelle, additional, McCulloch, Mignon, additional, Matsuda-Abedini, Mina, additional, Michael, Mini, additional, Khan, Mohammad, additional, Salih, Mohammad, additional, Carlton, Mycah Ann, additional, Plunkett, Ngairre, additional, Webb, Nick, additional, Scholes-Robertson, Nicki, additional, Larkins, Nicolas, additional, Evangelidis, Nicole, additional, Yoder, Nigel, additional, Meza, Norma, additional, Olver, Paige, additional, Carlton, Paiyton, additional, Brophy, Patrick, additional, Tugwell, Peter, additional, Cochat, Pierre, additional, Mehrotra, Rajnish, additional, Wolfenden, Raphael, additional, Gbadegesin, Rasheed, additional, Benavides, Raymond, additional, Johnson, Rebecca, additional, Morales, Ricardo, additional, McGee, Richard, additional, Fish, Richard, additional, Gardos, Robert, additional, Pecoits-Filho, Roberto, additional, Vargas, Rocio, additional, Saldivar, Rodolfo, additional, Coppo, Rosanna, additional, Shroff, Rukshana, additional, Raina, Rupesh, additional, Youssouf, Sajeda, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Baldacchino, Sarah, additional, Wenderfer, Scott, additional, Wolfenden, Sebastian, additional, Carlton, Selah, additional, Sutton, Shanna, additional, Murphy, Shannon, additional, Teo, Sharon, additional, Salih, Sheyma, additional, Carlton, Silas, additional, Carter, Simon, additional, Pearson, Simone, additional, Khan, Simra, additional, Wilson, Skyla, additional, Sharma, Sonia, additional, Alexander, Stephen, additional, Marks, Stephen, additional, Cornish, Stephen, additional, Goldstein, Stuart, additional, Furth, Susan, additional, Mendley, Susan, additional, Lippincott, Susan, additional, Charles, Symone, additional, Mitchell-Smith, Terri, additional, Harris, Tess, additional, Vetter, Thorsten, additional, Carlton, Tiffany, additional, Carlton, Timothy, additional, Querfeld, Uwe, additional, Saglimbene, Valeria, additional, Charles, Virginia, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Machuca, Yenissey, additional, Salih, Yusuf, additional, Anh, Yo Han, additional, Perkins, Zachary, additional, and Salih, Zeynab, additional

Published
2020
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5. Both the rituximab dose and maintenance immunosuppression in steroid-dependent/frequently-relapsing nephrotic syndrome have important effects on outcomes

Author

Chan, Eugene Yu-hin, primary, Webb, Hazel, additional, Yu, Ellen, additional, Ghiggeri, Gian Marco, additional, Kemper, Markus J., additional, Ma, Alison Lap-tak, additional, Yamamura, Tomohiko, additional, Sinha, Aditi, additional, Bagga, Arvind, additional, Hogan, Julien, additional, Dossier, Claire, additional, Vivarelli, Marina, additional, Liu, Isaac Desheng, additional, Kamei, Koichi, additional, Ishikura, Kenji, additional, Saini, Priya, additional, and Tullus, Kjell, additional

Published
2020
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11. Serum-soluble urokinase receptor levels do not distinguish focal segmental glomerulosclerosis from other causes of nephrotic syndrome in children

Author

Sinha, Aditi, primary, Bajpai, Jaya, additional, Saini, Savita, additional, Bhatia, Divya, additional, Gupta, Aarti, additional, Puraswani, Mamta, additional, Dinda, Amit K., additional, Agarwal, Sanjay K., additional, Sopory, Shailaja, additional, Pandey, Ravindra M., additional, Hari, Pankaj, additional, and Bagga, Arvind, additional

Published
2014
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12. Treatment with tacrolimus and prednisolone is preferable to intravenous cyclophosphamide as the initial therapy for children with steroid-resistant nephrotic syndrome

Author

Gulati, Ashima, primary, Sinha, Aditi, additional, Gupta, Aarti, additional, Kanitkar, Madhuri, additional, Sreenivas, Vishnubhatla, additional, Sharma, Jyoti, additional, Mantan, Mukta, additional, Agarwal, Indira, additional, Dinda, Amit K., additional, Hari, Pankaj, additional, and Bagga, Arvind, additional

Published
2012
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13. Prompt plasma exchanges and immunosuppressive treatment improves the outcomes of anti-factor H autoantibody-associated hemolytic uremic syndrome in children.

Author

Sinha, Aditi, Gulati, Ashima, Saini, Savita, Blanc, Caroline, Gupta, Aarti, Gurjar, Bahadur Singh, Saini, Himanshi, Kotresh, Shambhuprasad T, Ali, Uma, Bhatia, Divya, Ohri, Alpana, Kumar, Manish, Agarwal, Indira, Gulati, Sanjeev, Anand, Kanav, Vijayakumar, M, Sinha, Rajiv, Sethi, Sidharth, Salmona, Maud, and George, Anna

Subjects
*HEMOLYTIC anemia treatment, *HEMOLYTIC-uremic syndrome, *NF-kappa B, *IMMUNOSUPPRESSION, *IMMUNOREGULATION, *THERAPEUTICS
Abstract

Antibodies to complement factor H are an uncommon cause of hemolytic uremic syndrome (HUS). Information on clinical features and outcomes in children is limited. In order to explore this we studied a multicenter cohort of 138 Indian children with anti-complement factor H antibody associated HUS, constituting 56% of patients with HUS. Antibody titers were high (mean 7054 AU/ml) and correlated inversely with levels of complement C3, but not complement factor H. Homozygous deletion of the CFHR1 gene was found in 60 of 68 patients. Therapies included dialysis in 119 children, 105 receiving plasma exchanges and 26 intravenous immunoglobulin. Induction immunosuppression consisted of 87 children receiving prednisolone with or without intravenous cyclophosphamide or rituximab. Antibody titers fell significantly following plasma exchanges and increased during relapses. Adverse outcome (stage 4-5 CKD or death) was seen in 36 at 3 months and 41 by last follow up, with relapse in 14 of 122 available children. Significant independent risk factors for adverse outcome were an antibody titer over 8000 AU/ml, low C3 and delay in plasma exchange. Combined plasma exchanges and induction immunosuppression resulted in significantly improved renal survival: one adverse outcome prevented for every 2.6 patients treated. Maintenance immunosuppressive therapy, of prednisolone with either mycophenolate mofetil or azathioprine, significantly reduced the risk of relapses. Thus, prompt use of immunosuppressive agents and plasma exchanges are useful for improving outcomes in pediatric patients with anti-complement factor H-associated HUS. [ABSTRACT FROM AUTHOR]

Published
2014
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