Design and implementation of an action plan for justice, equity, diversity, and inclusion within the Clinical Genome Resource

Authors: Popejoy, Alice B. ^{1, 2}, Ritter, Deborah I. ^{3, ∗}, Azzariti, Danielle ⁴, Berg, Jonathan S. ⁵, Bulkley, Joanna E. ⁶, Cho, Mildred ^{7, 8, 9}, Gonzaga-Jauregui, Claudia ¹⁰, Klein, Teri E. ^{8, 11}, Martschenko, Daphne O. ^{7, 9}, Oni-Orisan, Akinyemi ¹², Ramos, Erin M. ¹³, Rehm, Heidi L. ^{4, 14}, Riggs, Erin R. ¹⁵, Wright, Matthew W. ¹¹, Yudell, Michael ¹⁶, Plon, Sharon E. ³, Morales, Joannella ¹³

Source: In The American Journal of Human Genetics 6 February 2025 112(2):215-223

Implementing evidence-based assertions of clinical actionability in the context of secondary findings: Updates from the ClinGen Actionability Working Group

Authors: Pak, Christine M., Gilmore, Marian J., Bulkley, Joanna E., Chakraborty, Pranesh, Dagan-Rosenfeld, Orit, Foreman, Ann Katherine M., Gollob, Michael H., Jenkins, Charisma L., Katz, Alexander E., Lee, Kristy, Meeks, Naomi, O’Daniel, Julianne M., Posey, Jennifer E., Rego, Shannon M., Shah, Neethu, Steiner, Robert D., Stergachis, Andrew B., Subramanian, Sai Lakshmi, Trotter, Tracy, Wallace, Kathleen, Williams, Marc S., Goddard, Katrina A.B., Buchanan, Adam H., Manickam, Kandamurugu, Powell, Bradford, Ezzell Hunter, Jessica

Source: In Genetics in Medicine August 2024 26(8)

Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (CHARM) Study: A prospective cohort study

Authors: Guo, Boya, Knerr, Sarah, Kauffman, Tia L., Mittendorf, Kathleen F., Keast, Erin, Gilmore, Marian J., Feigelson, Heather Spencer, Lynch, Frances L., Muessig, Kristin R., Okuyama, Sonia, Zepp, Jamilyn M., Veenstra, David L., Hsu, Li, Phipps, Amanda I., Lindström, Sara, Leo, Michael C., Goddard, Katrina A. B., Wilfond, Benjamin S., Devine, Beth, Allen, Jake, Amendola, Laura M., Anderson, Katherine P., Angelo, Frank, Arnold, Briana L., Bellcross, Cecelia, Bendelow, Tiffany, Biesecker, Barbara B., Breslin, Kristin D., Bulkley, Joanna E., Booker, Kristina F., Caruncho, Mikaella, Davis, James V., Deutsch, Sonia, Dorschner, Michael O., Duenas, Devan M., Eubanks, Donna J., Freed, Amanda S., Greaney, Clay, Gruß, Inga, Guerra, Claudia, Holup, Joan, Hunter, Jessica Ezzell, Ingphakorn, Chalinya L., Jackson, Paige, Jarvik, Gail P., Jenkins, Charisma L., Joseph, Galen, Karliner, Leah S., Koomas, Alyssa H., Kraft, Stephanie A., Lee, Mi H., Lee, Robin, Lee, Sandra Soo‐Jin, Lewis, Hannah S., Liles, Elizabeth G., Lindberg, Nangel M., McMullen, Carmit K., Medina, Elizabeth, Peterson, C. Samuel, Paolucci, Angela R., Perez, Rosse Rodriguez, Porter, Kathryn M., Ransom, Chelese L., Reyes, Ana, Riddle, Leslie S., Robinson, Sperry, Rolf, Bradley A., Rope, Alan F., Schield, Emily, Schneider, Jennifer L., Shipman, Kelly J., Shirts, Brian H, Shuster, Elizabeth, Syngal, Sapna, Torgrimson‐Ojerio, Britta N., Ukaegbu, Chinedu, Vandermeer, Meredith L., Varga, Alexandra M., Whitebirch, W. Chris, White, Larissa Lee

Source: Cancer medicine. 12(18):19112-19125

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100195119104.0x000001&indx=1&recIds=ETOCvdc_100195119104.0x000001

The impact of autism spectrum disorder on parent employment: Results from the r‐Kids study

Authors: Lynch, Frances L., Bulkley, Joanna E., Varga, Alexandra, Crawford, Phillip, Croen, Lisa A., Daida, Yihe G., Fombonne, Eric, Hatch, Brigit, Massolo, Maria, Dickerson, John F.

Source: Autism research. 16(3):642-652

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100177478070.0x000001&indx=1&recIds=ETOCvdc_100177478070.0x000001

Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population

Authors: Allen, Jake, Angelo, Frank, Arnold, Briana L., Bellcross, Cecelia, Bendelow, Tiffany, B, Barbara, Biesecker, Breslin, Kristin D., Booker, Kristina F., Caruncho, Mikaella, Davis, James V., Deutsch, Sonia, Devine, Beth, Dorschner, Michael O., Duenas, Devan, Eubanks, Donna J., Feigelson, Heather Spencer, Freed, Amanda S., Greaney, Clay, Gruß, Inga, Guerra, Claudia, Guo, Boya, Holup, Joan, Ingphakorn, Chalinya L., Jackson, Paige, Jarvik, Gail P., Jenkins, Charisma L., Karliner, Leah S., Kaufmann, Tia, Keast, Erin, Knerr, Sarah, Koomas, Alyssa H., Kraft, Stephanie A., Lee, Mi H., Lee, Robin, Soo-Jin Lee, Sandra, Lewis, Hannah S., Liles, Elizabeth G., Lindberg, Nangel M., Lynch, Frances, McMullen, Carmit K., Medina, Elizabeth, Mittendorf, Kathleen F., Muessig, Kristin R., Okuyama, Sonia, Peterson, C. Samuel, Paolucci, Angela R., Perez, Rosse Rodriguez, Porter, Kathryn M., Ransom, Chelese L., Reyes, Ana, Robinson, Sperry, Rolf, Bradley A., Rope, Alan F., Schield, Emily, Schneider, Jennifer L., Shipman, Kelly J., Shirts, Brian H., Shuster, Elizabeth, Syngal, Sapna, Torgrimson-Ojerio, Britta N., Ukaegbu, Chinedu, Vandermeer, Meredith L., Varga, Alexandra M., Veenstra, David L., Whitebirch, W. Chris, Lee White, Larissa, Hunter, Jessica Ezzell, Riddle, Leslie, Joseph, Galen, Amendola, Laura M., Gilmore, Marian J., Zepp, Jamilyn M., Bulkley, Joanna E., Anderson, Katherine P., Goddard, Katrina A.B., Wilfond, Benjamin S., Leo, Michael C.

Source: In Genetics in Medicine November 2023 25(11)

An accessible, relational, inclusive, and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial

Authors: Joseph, Galen, Leo, Michael C., Riddle, Leslie, Guerra, Claudia, Amendola, Laura M., Gilmore, Marian J., Rolf, Bradley A., Dorschner, Michael O., Zepp, Jamilyn, Biesecker, Barbara B., Caruncho, Mikaella, Hunter, Jessica Ezzell, Keast, Erin, Lewis, Hannah S., Duenas, Devan, Kauffman, Tia, Bulkley, Joanna E., Anderson, Katherine P., Jarvik, Gail P., Goddard, Katrina A.B., Wilfond, Benjamin S.

Source: In Genetics in Medicine November 2022 24(11):2228-2239

Emotional and Behavioral Problems in Youth with Autism: High Prevalence and Impact on Functioning

Authors: Fombonne, Eric, Croen, Lisa A., Bulkley, Joanna E., Varga, Alexandra M., Daida, Yihe G., Hatch, Brigit A., Dickerson, John F., Lynch, Frances L.

Source: Journal of developmental and behavioral pediatrics. 43(3):140-148

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100156356628.0x000001&indx=1&recIds=ETOCvdc_100156356628.0x000001

ClinGen’s Pediatric Actionability Working Group: Clinical actionability of secondary findings from genome-scale sequencing in children and adolescents

Authors: Hunter, Jessica Ezzell, Jenkins, Charisma L., Bulkley, Joanna E., Gilmore, Marian J., Lee, Kristy, Pak, Christine M., Wallace, Kathleen E., Buchanan, Adam H., Foreman, Ann Katherine M., Freed, Amanda S., Goehringer, Scott, Manickam, Kandamurugu, Meeks, Naomi J.L., Ramos, Erin M., Shah, Neethu, Steiner, Robert D., Subramanian, Sai Lakshmi, Trotter, Tracy, Webber, Elizabeth M., Williams, Marc S., Goddard, Katrina A.B., Powell, Bradford C.

Source: In Genetics in Medicine June 2022 24(6):1328-1335

Laboratory-related outcomes from integrating an accessible delivery model for hereditary cancer risk assessment and genetic testing in populations with barriers to access

Authors: Allen, Jake, Amendola, Laura M., Anderson, Katherine P., Angelo, Frank, Arnold, Briana L., Bellcross, Cecelia, Bendelow, Tiffany, Biesecker, Barbara B., Breslin, Kristin D., Bulkley, Joanna E., Booker, Kristina F., Caruncho, Mikaella, Davis, James V., Deutsch, Sonia, Devine, Beth, Dorschner, Michael O., Duenas, Devan M., Eubanks, Donna J., Feigelson, Heather Spencer, Freed, Amanda S., Gilmore, Marian J., Goddard, Katrina A.B., Greaney, Clay, Gruß, Inga, Guerra, Claudia, Guo, Boya, Holup, Joan, Hunter, Jessica Ezzell, Ingphakorn, Chalinya L., Jackson, Paige, Jarvik, Gail P., Jenkins, Charisma L., Joseph, Galen, Karliner, Leah S., Kauffman, Tia L., Keast, Erin, Knerr, Sarah, Koomas, Alyssa H., Kraft, Stephanie A., Lee, Mi H., Lee, Robin, Soo-Jin Lee, Sandra, Leo, Michael C., Lewis, Hannah S., Liles, Elizabeth G., Lindberg, Nangel M., Lynch, Frances, McMullen, Carmit K., Medina, Elizabeth, Mittendorf, Kathleen F., Muessig, Kristin R., Okuyama, Sonia, Peterson, C. Samuel, Paolucci, Angela R., Perez, Rosse Rodriguez, Porter, Kathryn M., Ransom, Chelese L., Reyes, Ana, Riddle, Leslie S., Robinson, Sperry, Rolf, Bradley A., Rope, Alan F., Schield, Emily, Schneider, Jennifer L., Shipman, Kelly J., Shirts, Brian H., Shuster, Elizabeth, Syngal, Sapna, Torgrimson-Ojerio, Britta N., Ukaegbu, Chinedu, Vandermeer, Meredith L., Varga, Alexandra M., Veenstra, David L., Whitebirch, W. Chris, Lee White, Larissa, Wilfond, Benjamin S., Zepp, Jamilyn M., Bellcross, Cecilia, Riddle, Leslie

Source: In Genetics in Medicine June 2022 24(6):1196-1205

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy

Authors: Bulkley, Joanna E., O’Keeffe-Rosetti, Maureen, Wendel, Christopher S., Davis, James V., Danforth, Kim N., Harrison, Teresa N., Kwan, Marilyn L., Munneke, Julie, Brooks, Neon, Grant, Marcia, Leo, Michael C., Banegas, Matthew, Weinmann, Sheila, McMullen, Carmit K.

Source: Quality of Life Research, 2020 Apr 01. 29(4), 879-889.

Access URL: https://www.jstor.org/stable/48733161

Use of the Electronic Health Record to Assess Prevalence of Anemia and Iron Deficiency in Pregnancy

Authors: Sharma, Andrea J ^*, Ford, Nicole D, Bulkley, Joanna E, Jenkins, Lindsay M, Vesco, Kimberly K, Williams, Anne M

Source: In The Journal of Nutrition November 2021 151(11):3588-3595

Factors That Influence Selectionof Urinary Diversion Among Bladder Cancer Patients in 3 Community-based Integrated Health Care Systems

Authors: Kwan, Marilyn L., Leo, Michael C., Danforth, Kim N., Weinmann, Sheila, Lee, Valerie S., Munneke, Julie R., Bulkley, Joanna E., Rosetti, Maureen O'Keeffe, Yi, David K., Banegas, Matthew P., Wagner, Matthew D., Williams, Stephen G., Aaronson, David S., Grant, Marcia, Krouse, Robert S., Gilbert, Scott M., McMullen, Carmit K.

Source: In Urology March 2019 125:222-229

Diet and Behavior Modifications by Long-term Rectal Cancer Survivors to Manage Bowel Dysfunction-Associated Symptoms*

Authors: Sun, Virginia, Wendel, Christopher S., Demark-Wahnefried, Wendy, Grant, Marcia, McMullen, Carmit K., Bulkley, Joanna E., Herrinton, Lisa J., Hornbrook, Mark C., Krouse, Robert S.

Source: Nutrition and cancer. 71(1):89-99

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100112927085.0x000001&indx=1&recIds=ETOCvdc_100112927085.0x000001

Physical activity, bowel function, and quality of life among rectal cancer survivors

Authors: Krouse, Robert S., Wendel, Christopher S., Garcia, David O., Grant, Marcia, Temple, Larissa F., Going, Scott B., Hornbrook, Mark C., Bulkley, Joanna E., McMullen, Carmit K., Herrinton, Lisa J.

Source: Quality of Life Research, 2017 Nov 01. 26(11), 3131-3142.

Access URL: https://www.jstor.org/stable/44856758

The association of bowel function, participation in life activities, and quality of life in rectal cancer survivors.

Authors: Bulkley, Joanna E.¹ (AUTHOR) Joanna.E.Bulkley@kpchr.org, McMullen, Carmit K.¹ (AUTHOR), Rawlings, Andreea M.¹ (AUTHOR), Krouse, Robert S.² (AUTHOR), Francisco, Melanie C.¹ (AUTHOR), Sterrett, Andrew T.³ (AUTHOR), Burnett-Hartman, Andrea N.³ (AUTHOR), Pawloski, Pamala A.⁴ (AUTHOR), Corley, Douglas A.⁵ (AUTHOR), Colwell, Janice C.⁶ (AUTHOR), Feigelson, Heather Spencer³ (AUTHOR)

Source: Quality of Life Research. Feb2022, Vol. 31 Issue 2, p487-495. 9p. 5 Charts.

Subject Terms: *RECTAL cancer, *CANCER survivors, *FINANCIAL stress, *ELECTRONIC health records, *PARTICIPATION

Ongoing ostomy self-care challenges of long-term rectal cancer survivors

Authors: Bulkley, Joanna E., McMullen, Carmit K., Grant, Marcia, Wendel, Christopher, Hornbrook, Mark C., Krouse, Robert S.

Source: Supportive care in cancer. 26(11):3933-3939

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100125298533.0x000001&indx=1&recIds=ETOCvdc_100125298533.0x000001

Sexual Function and Health-Related Quality of Life in Long-Term Rectal Cancer Survivors

Authors: Sun, Virginia, Grant, Marcia, Wendel, Christopher S., McMullen, Carmit K., Bulkley, Joanna E., Herrinton, Lisa J., Hornbrook, Mark C., Krouse, Robert S.

Source: In The Journal of Sexual Medicine July 2016 13(7):1071-1079

Improving management of the genitourinary syndrome of menopause: evaluation of a health system–based, cluster-randomized intervention

Authors: Vesco, Kimberly K., Leo, Michael C., Bulkley, Joanna E., Beadle, Kate R., Stoneburner, Ashley B., Francisco, Melanie, Clark, Amanda L.

Source: In American Journal of Obstetrics and Gynecology January 2021 224(1):62-62

Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study.

Authors: Gilmore, Marian J., Knerr, Sarah, Kraft, Stephanie A., Bulkley, Joanna E., Biesecker, Barbara B., Feigelson, Heather Spencer, Hunter, Jessica Ezzell, Jenkins, Charisma L., Kauffman, Tia L., Lee, Sandra Soo-Jin, Liles, Elizabeth G., Mittendorf, Kathleen F., Muessig, Kristin R., Porter, Kathryn M., Rolf, Bradley A., Rope, Alan F., Zepp, Jamilyn M., Anderson, Katherine Patrice, Devine, Beth, Joseph, Galen

Source: Public Health Genomics; Jan-Dec2024, Vol. 27 Issue 1, p16-22, 7p

Subject Terms: HEREDITARY cancer syndromes, DISEASE risk factors, MEDICAL care, MEDICAL terminology, ETHNICITY, HEALTH equity

Bias in Self-reported Prepregnancy Weight Across Maternal and Clinical Characteristics.

Authors: Sharma, Andrea J.^1,2 AJSharma@cdc.gov, Bulkley, Joanna E.³, Stoneburner, Ashley B.³, Dandamudi, Padmavati³, Leo, Michael³, Callaghan, Williams M.¹, Vesco, Kimberly K.^3,4

Source: Maternal & Child Health Journal. Aug2021, Vol. 25 Issue 8, p1242-1253. 12p. 1 Diagram, 3 Charts, 1 Graph.

Subject Terms: *WEIGHT gain in pregnancy, *BODY weight, *SELF-evaluation, *RESEARCH methodology, *MULTIPLE regression analysis, *RETROSPECTIVE studies, *PREGNANCY outcomes, *RESEARCH funding, *DESCRIPTIVE statistics, *ELECTRONIC health records, *BODY mass index, *PRENATAL care, *DATA analysis software, *SECONDARY analysis, *PREGNANCY