Core Outcome Sets for Medium-Chain Acyl-CoA Dehydrogenase Deficiency and Phenylketonuria

Evidence to guide treatment of pediatric medium-chain acyl-coenzyme A dehydrogenase (MCAD) deficiency and phenylketonuria (PKU) is fragmented because of large variability in outcome selection and measurement. Our goal was to develop core outcome sets (COSs) for these diseases to facilitate meaningfu...

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Veröffentlicht in:	Pediatrics (Evanston) 2021-08, Vol.148 (2), p.1
Hauptverfasser:	Pugliese, Michael, Tingley, Kylie, Chow, Andrea, Pallone, Nicole, Smith, Maureen, Chakraborty, Pranesh, Geraghty, Michael T, Irwin, Julie K, Mitchell, John J, Stockler, Sylvia, Nicholls, Stuart G, Offringa, Martin, Rahman, Alvi, Tessier, Laure A, Butcher, Nancy J, Iverson, Ryan, Lamoureux, Monica, Clifford, Tammy J, Hutton, Brian, Paik, Karen, Tao, Jessica, Skidmore, Becky, Coyle, Doug, Duddy, Kathleen, Dyack, Sarah, Greenberg, Cheryl R, Jain Ghai, Shailly, Karp, Natalya, Korngut, Lawrence, Kronick, Jonathan, MacKenzie, Alex, MacKenzie, Jennifer, Maranda, Bruno, Potter, Murray, Prasad, Chitra, Schulze, Andreas, Sparkes, Rebecca, Taljaard, Monica, Trakadis, Yannis, Walia, Jagdeep, Potter, Beth K
Format:	Artikel
Sprache:	eng
Schlagworte:	Acyl-CoA dehydrogenase Acyl-CoA Dehydrogenase - deficiency Child Child, Preschool Children Coenzyme A Dehydrogenases Demographic aspects Diagnosis Diseases Humans Lipid Metabolism, Inborn Errors - therapy Medical personnel Medium chain acyl-CoA dehydrogenase deficiency Outcome Assessment, Health Care Pediatric diseases Pediatrics Phenylketonuria Phenylketonurias - therapy Rare diseases Risk factors
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