@article{d99b16b29bbb47cf8afd5948383b3d3a,
title = "The Benefits and Challenges of Preconsent in a Multisite, Pediatric Sickle Cell Intervention Trial",
abstract = "Enrollment of patients in sickle cell intervention trials has been challenging due to difficulty in obtaining consent from a legal guardian and lack of collaboration between emergency medicine and hematology. We utilized education and preconsent in a pediatric multisite sickle cell intervention trial to overcome these challenges. Overall, 48 patients were enrolled after being preconsented. Variable Institutional Review Board policies related to preconsent validity and its allowable duration decreased the advantages of preconsent at some sites. The utility of preconsent for future intervention trials largely depends on local Institutional Review Board policies. Preeducation may also benefit the consent process, regardless of site differences.",
keywords = "consent, preconsent, pediatric hematology/oncology, sickle cell disease",
author = "Mark Nimmer and Jason Czachor and Laura Turner and Bobbe Thomas and Woodford, {Ashley L.} and Karli Carpenter and Victor Gonzalez and Liem, {Robert I.} and Angela Ellison and Casper, {T. Charles} and Brousseau, {David C.} and {for the sickle cell working group of the Pediatric Emergency Care Applied Research Network (PECARN)}",
note = "Funding Information: This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development under Award Number 5R01HD062347-01 and Administrative Supplement Number 3R01HD062347-03S as well as the National Heart, Lung, and Blood Institute under Award Number 1R01HL103427-01A1. Further support was provided by the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), Emergency Medical Services for Children (EMSC) Network Development Demonstration Program for the Pediatric Emergency Care Applied Research Network (PECARN) under cooperative agreement number U03MC00008, and is partially supported by MCHB cooperative agreements: U03MC00001, U03MC00003, U03MC00006, U03MC00007, U03MC22684, and U03MC22685. The information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government. Publisher Copyright: {\textcopyright} 2016 Wiley Periodicals, Inc.",
year = "2016",
month = sep,
day = "1",
doi = "10.1002/pbc.26013",
language = "English (US)",
volume = "63",
pages = "1649--1652",
journal = "Medical and Pediatric Oncology",
issn = "1545-5009",
publisher = "Wiley-Liss Inc.",
number = "9",
}