Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening

Bailey, D. B.
Armstrong, F. D.
Kemper, A. R.
Skinner, D.
Warren, S. F.

January 2009

Objective As technology advances, newborn screening will be possible for conditions not screened tod...

Parent Reactions to Fragile X Premutation Diagnosis in the Newborn Period

Sorensen, Page Lundy

January 2014

This paper explores fragile X newborn screening (FXNBS) from the perspective of parents whose newbor...

Eliciting parental support for the use of newborn blood spots for pediatric research

Edwina H. Yeung
Germaine Buck Louis
David Lawrence
Kurunthachalam Kannan
Alexander C. McLain
Michele Caggana
Charlotte Druschel
Erin Bell

February 2016

Abstract Background Biomarkers of exposures such as infection or environmental chemicals can be meas...

Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

Skinner, Debra
Choudhury, Summer
Sideris, John
Guarda, Sonia
Buansi, Allen
Roche, Myra
Powell, Cynthia
Bailey Jr., Donald B.

January 2011

The goal of this study was to document rates of parental consent in a pilot study of newborn screeni...

Fragile X Newborn Screening: Lessons Learned From a Multisite Screening Study

Bailey, Donald B.
Berry-Kravis, Elizabeth
Gane, Louise W.
Guarda, Sonia
Hagerman, Randi
Powell, Cynthia M.
Tassone, Flora
Wheeler, Anne

January 2017

BACKGROUND: Delays in the diagnosis of children with fragile X syndrome (FXS) suggest the possibilit...

Maternal Consequences of the Detection of Fragile X Carriers in Newborn Screening

Bailey, D. B.
Wheeler, A.
Berry-Kravis, E.
Hagerman, R.
Tassone, F.
Powell, C. M.
Roche, M.
Gane, L. W.
Sideris, J.

January 2015

The possibility of newborn screening for fragile X syndrome is complicated by the potential for iden...

Caregiver opinions about fragile X population screening

Bailey, Donald B.
Bishop, Ellen
Raspa, Melissa
Skinner, Debra

January 2012

To determine caregiver perceptions about population screening for fragile X and examine factors pote...

Obtaining Consent from Both Parents for Pediatric Research: What Does "Reasonably Available" Mean?

Nelson, D. K.
Skinner, D.
Guarda, S.
Choudhury, S.
Sideris, J.
Barnum, L.
Ten Haagen, K.
Heyward, Q.
Bailey, D. B.

January 2013

Circumstances surrounding parental availability and decision-making were examined in the setting of ...

Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis

Audrey Tluczek
Anne L. Ersig
Shinhyo Lee

September 2022

Genomic advances have contributed to a proliferation of newborn screening (NBS) programs. Psychosoci...

In the Early Postpartum Period, Parents are Interested in Newborn Genomic Testing

Waisbren, Susan E.
Bäck, Danielle K.
Liu, Christina
Kalia, Sarah S.
Ringer, Steven A.
Holm, Ingrid A.
Green, Robert C.

June 2016

Purpose We surveyed parents to ascertain interest in newborn genomic testing and determine whether t...

Information and informed consent for neonatal screening : Opinions and preferences of parents

Detmar, S.
Hosli, E.
Dijkstra, N.
Nijsingh, N.
Rijnders, M.
Verweij, M.

January 2007

Background: The current neonatal screening program ("the heel prick") involves taking a few drops of...

Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population

Powell, Sabrina N.
Byfield, Grace
Bennetone, Ashley
Frantz, Annabelle M.
Harrison, Langston K.
James-Crook, Erin R.
Osborne, Heather
Owens, Thomas H.
Shaw, Jonathan L.
O&apos
Milko, Laura V.

January 2022

Recent advances in genomic sequencing and genomic medicine are reshaping the landscape of clinical c...

Negotiating interests: revisiting the role of consent in newborn genetic screening

Wale, J

September 2020

With the development of new genetic sequencing technologies, comes a timely opportunity to revisit t...

Parents' views on accepting, declining, and expanding newborn bloodspot screening

van der Pal, Sylvia M.
Wins, Sophie
Klapwijk, Jasmijn E.
van Dijk, Tessa
Kater-Kuipers, Adriana
van der Ploeg, Catharina P. B.
Jans, Suze M. P. J.
Kemp, Stephan
Verschoof-Puite, Rendelien K.
van den Bosch, Lion J. M.
Henneman, Lidewij

August 2022

Introduction The goal of newborn bloodspot screening (NBS) is the early detection of treatable disor...

l Issues Relating to Newborn Screening

Henaghan, Mark
Wee, Richman
Dobbs, Kirsty

November 2018

The analysis in this part of the report is grounded in the rights-based Code of Rights, and takes in...

Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening

Bailey, D. B.
Armstrong, F. D.
Kemper, A. R.
Skinner, D.
Warren, S. F.

January 2009

Objective As technology advances, newborn screening will be possible for conditions not screened tod...

Parent Reactions to Fragile X Premutation Diagnosis in the Newborn Period

Sorensen, Page Lundy

January 2014

This paper explores fragile X newborn screening (FXNBS) from the perspective of parents whose newbor...

Eliciting parental support for the use of newborn blood spots for pediatric research

Edwina H. Yeung
Germaine Buck Louis
David Lawrence
Kurunthachalam Kannan
Alexander C. McLain
Michele Caggana
Charlotte Druschel
Erin Bell

February 2016

Abstract Background Biomarkers of exposures such as infection or environmental chemicals can be meas...

Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

Skinner, Debra
Choudhury, Summer
Sideris, John
Guarda, Sonia
Buansi, Allen
Roche, Myra
Powell, Cynthia
Bailey Jr., Donald B.

January 2011

The goal of this study was to document rates of parental consent in a pilot study of newborn screeni...

Fragile X Newborn Screening: Lessons Learned From a Multisite Screening Study

Bailey, Donald B.
Berry-Kravis, Elizabeth
Gane, Louise W.
Guarda, Sonia
Hagerman, Randi
Powell, Cynthia M.
Tassone, Flora
Wheeler, Anne

January 2017

BACKGROUND: Delays in the diagnosis of children with fragile X syndrome (FXS) suggest the possibilit...

Maternal Consequences of the Detection of Fragile X Carriers in Newborn Screening

Bailey, D. B.
Wheeler, A.
Berry-Kravis, E.
Hagerman, R.
Tassone, F.
Powell, C. M.
Roche, M.
Gane, L. W.
Sideris, J.

January 2015

The possibility of newborn screening for fragile X syndrome is complicated by the potential for iden...

Caregiver opinions about fragile X population screening

Bailey, Donald B.
Bishop, Ellen
Raspa, Melissa
Skinner, Debra

January 2012

To determine caregiver perceptions about population screening for fragile X and examine factors pote...

Obtaining Consent from Both Parents for Pediatric Research: What Does "Reasonably Available" Mean?

Nelson, D. K.
Skinner, D.
Guarda, S.
Choudhury, S.
Sideris, J.
Barnum, L.
Ten Haagen, K.
Heyward, Q.
Bailey, D. B.

January 2013

Circumstances surrounding parental availability and decision-making were examined in the setting of ...

Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis

Audrey Tluczek
Anne L. Ersig
Shinhyo Lee

September 2022

Genomic advances have contributed to a proliferation of newborn screening (NBS) programs. Psychosoci...

In the Early Postpartum Period, Parents are Interested in Newborn Genomic Testing

Waisbren, Susan E.
Bäck, Danielle K.
Liu, Christina
Kalia, Sarah S.
Ringer, Steven A.
Holm, Ingrid A.
Green, Robert C.

June 2016

Purpose We surveyed parents to ascertain interest in newborn genomic testing and determine whether t...

Information and informed consent for neonatal screening : Opinions and preferences of parents

Detmar, S.
Hosli, E.
Dijkstra, N.
Nijsingh, N.
Rijnders, M.
Verweij, M.

January 2007

Background: The current neonatal screening program ("the heel prick") involves taking a few drops of...

Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population

Powell, Sabrina N.
Byfield, Grace
Bennetone, Ashley
Frantz, Annabelle M.
Harrison, Langston K.
James-Crook, Erin R.
Osborne, Heather
Owens, Thomas H.
Shaw, Jonathan L.
O&apos
Milko, Laura V.

January 2022

Recent advances in genomic sequencing and genomic medicine are reshaping the landscape of clinical c...

Negotiating interests: revisiting the role of consent in newborn genetic screening

Wale, J

September 2020

With the development of new genetic sequencing technologies, comes a timely opportunity to revisit t...

Parents' views on accepting, declining, and expanding newborn bloodspot screening

van der Pal, Sylvia M.
Wins, Sophie
Klapwijk, Jasmijn E.
van Dijk, Tessa
Kater-Kuipers, Adriana
van der Ploeg, Catharina P. B.
Jans, Suze M. P. J.
Kemp, Stephan
Verschoof-Puite, Rendelien K.
van den Bosch, Lion J. M.
Henneman, Lidewij

August 2022

Introduction The goal of newborn bloodspot screening (NBS) is the early detection of treatable disor...

l Issues Relating to Newborn Screening

Henaghan, Mark
Wee, Richman
Dobbs, Kirsty

November 2018

The analysis in this part of the report is grounded in the rights-based Code of Rights, and takes in...

Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening

Bailey, D. B.
Armstrong, F. D.
Kemper, A. R.
Skinner, D.
Warren, S. F.

January 2009

Objective As technology advances, newborn screening will be possible for conditions not screened tod...

Parent Reactions to Fragile X Premutation Diagnosis in the Newborn Period

Sorensen, Page Lundy

January 2014

This paper explores fragile X newborn screening (FXNBS) from the perspective of parents whose newbor...

Eliciting parental support for the use of newborn blood spots for pediatric research

Edwina H. Yeung
Germaine Buck Louis
David Lawrence
Kurunthachalam Kannan
Alexander C. McLain
Michele Caggana
Charlotte Druschel
Erin Bell

February 2016

Abstract Background Biomarkers of exposures such as infection or environmental chemicals can be meas...

Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

Abstract

Extracted data

Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

Abstract

Extracted data

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