Preparing newborn screening for the future: a collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system

por Andrews, Sara M., Porter, Katherine Ackerman, Bailey, Donald B., Peay, Holly L.
Publicado 2022

Developmental profiles of infants with an FMR1 premutation

por Wheeler, Anne C., Sideris, John, Hagerman, Randi, Berry-Kravis, Elizabeth, Tassone, Flora, Bailey, Donald B.
Publicado 2016

A Digital Health App to Assess Decisional Capacity to Provide Informed Consent: Protocol for a Randomized Controlled Trial

por Furberg, Robert D, Raspa, Melissa, Wheeler, Anne C, McCormack, Lauren A, Bailey, Donald B
Publicado 2018

Health and reproductive experiences of women with an FMR1 premutation with and without fragile X premature ovarian insufficiency

por Wheeler, Anne C., Raspa, Melissa, Green, Annette, Bishop, Ellen, Bann, Carla, Edwards, Anne, Bailey, Donald B.
Publicado 2014

Expert Evaluation of Strategies to Modernize Newborn Screening in the United States

por Bailey, Donald B., Porter, Katherine Ackerman, Andrews, Sara M., Raspa, Melissa, Gwaltney, Angela Y., Peay, Holly L.
Publicado 2021

Developing a utility index for the Aberrant Behavior Checklist (ABC-C) for fragile X syndrome

por Kerr, Cicely, Breheny, Katie, Lloyd, Andrew, Brazier, John, Bailey, Donald B., Berry-Kravis, Elizabeth, Cohen, Jonathan, Petrillo, Jennifer
Publicado 2014

Early Identification of Fragile X Syndrome through Expanded Newborn Screening

por Okoniewski, Katherine C., Wheeler, Anne C., Lee, Stacey, Boyea, Beth, Raspa, Melissa, Taylor, Jennifer L., Bailey, Donald B.
Publicado 2019

Supporting informed clinical trial decisions: Results from a randomized controlled trial evaluating a digital decision support tool for those with intellectual disability

por McCormack, Lauren A., Wylie, Amanda, Moultrie, Rebecca, Furberg, Robert D., Wheeler, Anne C., Treiman, Katherine, Bailey, Donald B., Raspa, Melissa
Publicado 2019

Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete choice experiment

por Lewis, Megan A., Stine, Alex, Paquin, Ryan S., Mansfield, Carol, Wood, Dallas, Rini, Christine, Roche, Myra I., Powell, Cynthia M., Berg, Jonathan S., Bailey, Donald B.
Publicado 2017

Mavoglurant in adolescents with fragile X syndrome: analysis of Clinical Global Impression-Improvement source data from a double-blind therapeutic study followed by an open-label,...

por Bailey, Donald B., Berry-Kravis, Elizabeth, Wheeler, Anne, Raspa, Melissa, Merrien, Florence, Ricart, Javier, Koumaras, Barbara, Rosenkranz, Gerd, Tomlinson, Mark, von Raison, Florian, Apostol, George
Publicado 2015

Skills attained by infants with congenital Zika syndrome: Pilot data from Brazil

por Wheeler, Anne C., Ventura, Camila V., Ridenour, Ty, Toth, Danielle, Nobrega, Lucélia Lima, Silva de Souza Dantas, Lana Claudia, Rocha, Camilla, Bailey, Donald B., Ventura, Liana O.
Publicado 2018

Developmental Outcomes Among Young Children With Congenital Zika Syndrome in Brazil

por Wheeler, Anne C., Toth, Danielle, Ridenour, Ty, Lima Nóbrega, Lucélia, Borba Firmino, Raíne, Marques da Silva, Claudia, Carvalho, Pollyanna, Marques, Douglas, Okoniewski, Katherine, Ventura, Liana O., Bailey, Donald B., Ventura, Camila V.
Publicado 2020

Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized...

por Milko, Laura V., Rini, Christine, Lewis, Megan A., Butterfield, Rita M., Lin, Feng-Chang, Paquin, Ryan S., Powell, Bradford C., Roche, Myra I., Souris, Katherine J., Bailey, Donald B., Berg, Jonathan S., Powell, Cynthia M.
Publicado 2018

Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study

por Peay, Holly L., Gwaltney, Angela You, Moultrie, Rebecca, Cope, Heidi, Boyea, Beth Lincoln‐, Porter, Katherine Ackerman, Duparc, Martin, Alexander, Amir A., Biesecker, Barbara B., Isiaq, Aminah, Check, Jennifer, Gehtland, Lisa, Bailey, Donald B., King, Nancy M. P.
Publicado 2022

Evaluation of X-Linked Adrenoleukodystrophy Newborn Screening in North Carolina

por Lee, Stacey, Clinard, Kristin, Young, Sarah P., Rehder, Catherine W., Fan, Zheng, Calikoglu, Ali S., Bali, Deeksha S., Bailey, Donald B., Gehtland, Lisa M., Millington, David S., Patel, Hari S., Beckloff, Sara E., Zimmerman, Scott J., Powell, Cynthia M., Taylor, Jennifer L.
Publicado 2020

Outreach to new mothers through direct mail and email: recruitment in the Early Check research study

por Paquin, Ryan S., Lewis, Megan A., Harper, Blake A., Moultrie, Rebecca R., Gwaltney, Angela, Gehtland, Lisa M., Peay, Holly L., Duparc, Martin, Raspa, Melissa, Wheeler, Anne C., Powell, Cynthia M., King, Nancy M. P., Shone, Scott M., Bailey, Donald B.
Publicado 2021

A Voluntary Statewide Newborn Screening Pilot for Spinal Muscular Atrophy: Results from Early Check

por Kucera, Katerina S., Taylor, Jennifer L., Robles, Veronica R., Clinard, Kristin, Migliore, Brooke, Boyea, Beth Lincoln, Okoniewski, Katherine C., Duparc, Martin, Rehder, Catherine W., Shone, Scott M., Fan, Zheng, Raspa, Melissa, Peay, Holly L., Wheeler, Anne C., Powell, Cynthia M., Bailey, Donald B., Gehtland, Lisa M.
Publicado 2021

Early Check: translational science at the intersection of public health and newborn screening

por Bailey, Donald B., Gehtland, Lisa M., Lewis, Megan A., Peay, Holly, Raspa, Melissa, Shone, Scott M., Taylor, Jennifer L., Wheeler, Anne C., Cotten, Michael, King, Nancy M. P., Powell, Cynthia M., Biesecker, Barbara, Bishop, Christine E., Boyea, Beth Lincoln, Duparc, Martin, Harper, Blake A., Kemper, Alex R., Lee, Stacey N., Moultrie, Rebecca, Okoniewski, Katherine C., Paquin, Ryan S., Pettit, Denise, Porter, Katherine Ackerman, Zimmerman, Scott J.
Publicado 2019