The Benefits and Challenges of Preconsent in a Multisite, Pediatric Sickle Cell Intervention Trial

for the sickle cell working group of the Pediatric Emergency Care Applied Research Network (PECARN)

doi:10.1002/pbc.26013

The Benefits and Challenges of Preconsent in a Multisite, Pediatric Sickle Cell Intervention Trial

for the sickle cell working group of the Pediatric Emergency Care Applied Research Network (PECARN)

Medical College of Wisconsin
Children's Hospital of Michigan
Northwestern University
Children's National Medical Center
The Children's Hospital of Philadelphia
University of Pittsburgh
Baylor College of Medicine
Children's Memorial Hospital
University of Utah
Medical College of Wisconsin and Children's Research Institute of Children's Wisconsin

Research output: Contribution to journal › Article › peer-review

4 Scopus citations

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.

Original language	English
Pages (from-to)	1649-1652
Number of pages	4
Journal	Pediatric Blood and Cancer
Volume	63
Issue number	9
DOIs	https://doi.org/10.1002/pbc.26013
State	Published - 1 Sep 2016
Externally published	Yes

Keywords

consent
preconsent, pediatric hematology/oncology
sickle cell disease

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10.1002/pbc.26013

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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 = "\{for the sickle cell working group of the Pediatric Emergency Care Applied Research Network (PECARN)\} and 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.\}",

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year = "2016",

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doi = "10.1002/pbc.26013",

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volume = "63",

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AU - for the sickle cell working group of the Pediatric Emergency Care Applied Research Network (PECARN)

AU - Nimmer, Mark

AU - Czachor, Jason

AU - Turner, Laura

AU - Thomas, Bobbe

AU - Woodford, Ashley L.

AU - Carpenter, Karli

AU - Gonzalez, Victor

AU - Liem, Robert I.

AU - Ellison, Angela

AU - Casper, T. Charles

AU - Brousseau, David C.

PY - 2016/9/1

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KW - sickle cell disease

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JO - Pediatric Blood and Cancer

JF - Pediatric Blood and Cancer

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ER -

The Benefits and Challenges of Preconsent in a Multisite, Pediatric Sickle Cell Intervention Trial

Abstract

Keywords

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