October 2022



    PhenX at ASHG
Visit PhenX Toolkit

PhenX returns to the American Society of Human Genetics (ASHG) annual meeting October 25-29 in Los Angeles, CA. Our team will host the following activities at the LA Convention Center:

  • Workshop: “Using the PhenX Toolkit to design studies optimized for data sharing,” Room 306, from 12:30 to 1:30 p.m. Friday, October 28. Register for the PhenX Toolkit workshop here!
  • Booth: Our team will be in Booth 948 in the exhibit hall to demonstrate how to use the Toolkit and answer questions. Please stop by and say hello!
  • Poster: “Using the PhenX COVID-19 Collection and Variable Compare Tool” (PB3241) in the poster hall from 3 to 4:45 p.m. on Wednesday, October 26.
  • Poster: “PhenX presents Bone and Joint updates and expansion of Social Determinants of Health” (PB3234) in the poster hall from 3 to 4:45 p.m. Wednesday, October 26.
    PhenX Highlights
Sickle Cell Disease Pain Protocols Released

The Sickle Cell Disease Pain Working Group selected 22 protocols for assessing pain in individuals with sickle cell disease for release in the PhenX Toolkit. The Sickle Cell Disease Pain Working Group was co-chaired by Dr. Amanda Brandow of the Medical College of Wisconsin, and Dr. Patrick Carroll of Johns Hopkins University (see Featured below). The SCD Pain protocols are the newest addition to the PhenX Sickle Cell Disease collections, which are funded by the National Heart, Lung, and Blood Institute (NHLBI). Phil Tonkins is the NHLBI project scientist. The PhenX Sickle Cell Disease Research and Scientific Panel, co-chaired by Dr. James Eckman of Emory University and Dr. John J. Strouse of Duke University, provides overarching guidance for the project.

Sustainability: PhenX Receives New 5-year Award!

PhenX was awarded a five-year cooperative agreement in September for “Establishing the PhenX Toolkit as a Biomedical Knowledgebase” (U24HG012556). Funding is provided by the National Human Genome Research Institute (NHGRI) of the National Institutes of Health and the Office of the Director, Office of Behavioral and Social Sciences Research (OD/OBSSR), the National Institute of Minority Health and Health Disparities (NIMHD), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Heart, Lung, and Blood Institute (NHLBI).

    Explore the PhenX Toolkit
newtutorials.JPG New Video Tutorials

A new video tutorial, “Get Started with the PhenX Toolkit,” provides an introduction to the Toolkit and an overview of its organization, navigation, and search features. 

Another new YouTube tutorial, “PhenX COVID-19 Variable Compare Tool,” helps users explore COVID-19 protocols in the Toolkit and to compare multiple COVID-19 protocols..

 Other tutorials available on YouTube include “Searching the Toolkit,” “Using the ‘My Toolkit’ Feature in the PhenX Toolkit,” and “Using the Browse Protocols Tree.”

 Top Domains and Protocols

*Top 5 Protocols:
  1. Ethnicity and Race
  2. Current Employment Status
  3. Educational Attainment - Individual
  4. Annual Family Income
  5. Current Age
Top 5 Domains:
  1. Substance Abuse and Addiction
  2. Mental Health Research
  3. Demographics
  4. Tobacco Regulatory Research
  5. Sickle Cell Disease

Rankings are based on downloads to “My Toolkit” from July 1 to September 30, 2022. See PhenX Toolkit Use Statistics for additional data.

NIH Funding Opportunities Mentioning PhenX

To date, PhenX has been mentioned in 595 Funding Opportunity Announcements (FOAs) and 29 Notices. Recent announcements include:

  • Applicants for Community Partnerships to Advance Science for Society (ComPASS) Coordination Center (RFA-RM-23-001) are referred to the PhenX Social Determinants of Health Collection for examples of SDOH and other measures.
  • Applicants for the Heal Initiative: Prevention and Management of Chronic Pain in Rural Populations (RFA-NR-23-001) are strongly encouraged to assess social determinants of health using measures in the PhenX SDOH Collection.
    PhenX in the Community
PhenX Presentations

Michelle Krzyzanowski of PhenX presented at a COVID Information Commons Webinar, giving a research lightning talk,  “Genomic Resource Grant for the PhenX Toolkit - expansion and sustainability,” on July 15, 2022.
Tabitha Hendershot of PhenX presented “PhenX Toolkit Overview: Using standard protocols for research with human participants,” for the University of Puerto Rico Human Papillomavirus (HPV) Interest Group, on June 17, 2022.

PhenX Publications

Enlow, M.B., et al. Standard measurement protocols for pediatric development research in the PhenX Toolkit, RTI Press, September 7, 2022.

Pan, H., et al. Identifying Datasets for Cross-Study Analysis in dbGaP using PhenX, Scientific Data, September 1, 2022.

Morton, C.C., et al. Tools for Standardized Data Collection: Speech, Language and Hearing Measurement Protocols in the PhenX Toolkit, Annals of Human Genetics, September 28, 2021.

Sickle Cell Disease: Pain Working Group Co-chairs

Amanda Brandow, DO

Dr. Brandow is a professor of pediatrics at the Medical College of Wisconsin in the section of hematology/oncology/bone marrow transplantation and the director of the Comprehensive Sickle Cell Disease Center. She is a physician-scientist who provides care for children with sickle cell disease (SCD) and other non-malignant hematologic conditions and conducts clinical and translational research focused on understanding the pathophysiology of acute and chronic pain in children and adults living with SCD. Dr. Brandow is also active in advocating for comprehensive pain management for individuals living with SCD at the national level and served on the US Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force and as chair of the “American Society of Hematology Evidence Based Sickle Cell Disease Management Guidelines for Acute and Chronic Pain.” She is an associate editor of the Journal of Pediatric Hematology/Oncology and is on the Selected Populations Section editorial board of the journal Pain Medicine.


C. Patrick Carroll, MD

Dr. Carroll, director of Psychiatric Services to the Sickle Cell Center for Adults and associate professor of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, is an internationally recognized expert in the multidisciplinary management of complex and high utilizing patients with SCD. His interests are in chronic pain, opioid pharmacology, and the care of complex patients. He attends in the Department of Psychiatry’s Pain Treatment Program, an intensive multidisciplinary treatment program for patients with refractory chronic pain or abnormal illness behavior. He has published a number of peer-reviewed papers on SCD pain and treatment utilization, in addition to his earlier work in behavioral pharmacology and addiction treatment. Along with the multidisciplinary team of the Johns Hopkins Sickle Cell Center for Adults, he has been consulted regionally and internationally regarding management of chronic pain, psychiatric illness, and treatment utilization in SCD.

Sickle Cell Disease: Curative Therapies Working Group Co-chairs

Ross Fasano, MD

Dr. Fasano is an associate professor of pathology and pediatric hematology/oncology with an adjunct appointment in adult hematology at Emory University School of Medicine. Dr. Fasano provides comprehensive care to children and young adult patients with SCD at Children’s Healthcare of Atlanta and Grady Memorial Hospital. He also currently serves as the director of hemapheresis at Emory University Hospital, and as the Transfusion Medicine Fellowship Program Director at Emory. His clinical expertise is in pediatric transfusion and hematology, with an emphasis on chronic transfusion therapy for children and adults with SCD. He is trained in pediatrics, pediatric hematology/oncology, and blood banking/transfusion medicine. His research focuses on clinical outcomes and complications of RBC transfusion in patients with hemoglobinopathies.

Matthew Hsieh, MD

Dr. Hsieh is a senior research physician in the Cellular and Molecular Therapeutics Branch of the National Heart, Lung, and Blood Institute (NHLBI) in Bethesda, Md. He is the lead physician/principle investigator for several clinical trials offering hematopoietic cell transplantation from matched related donors or gene therapy. He is on the faculty for the combined NHLBI/National Cancer Institute (NCI) hematology and oncology fellowship. His expertise and research interests include stem cell mobilization, organ dysfunction related sickle and beta-globin disorders, iron overload, neutrophil disorders, and hematopoietic cell transplantation. Additionally, he is/has been an associate investigator for several intramural and extramural studies, including industry sponsored clinical trials for gene therapy, late effects of hematopoietic cell transplantation in SCD, and haploidentical transplantation.

    Current PhenX Team Members
RTI International
Carol M. Hamilton, PhD
Principal Investigator
Tabitha Hendershot
Wayne Huggins, PhD
Cindy Changar, PMP
Project Manager
Jaleh Abedini, MS
Assistant Project Manager
Deborah Maiese, MPA
Consensus Coordinator
Lisa Cox, MS
Steve Edwards, PhD
Michelle Engle, PhD
Lisa Gehtland, MD
Lauren Gridley, MS
Cataia Ives, MS
Iris Glaze
Michelle Krzyzanowski, PhD
Thien Lam, MA
Mark Nelms, PhD
Helen Pan, PhD
Mike Phillips, MS 
Tanya Reeve, MS
Marian Sullivan, MPH
Pat West
David Williams, MEngr
National Human Genome Research Institute
Jyoti Dayal, MS
PhenX Project Scientist
Erin Ramos, PhD, MPH
Deputy Director, Division of Genomic Medicine
Stephanie Calluori
Scientific Program Analyst
PhenX Supplement Project Scientists
Jonathan Pollock, PhD
National Institute on Drug Abuse
William T. Riley, PhD
Office of Behavioral and Social Sciences Research
Kay Wanke, PhD, MPH
Tobacco Regulatory Science Program
PhenX Project Scientists, Co-funding
Nancy Jones, PhD, MA
National Institute on Minority Health and Health Disparities
Phil Tonkins, Jr., DrPH.
National Heart, Lung, and Blood Institute
PhenX has been funded by the National Human Genome Research Institute (NHGRI) since 2007. Current PhenX funding is a Genomic Resource Grant award (U41HG007050) from NHGRI. In addition, current or prior funding for PhenX has been provided by the National Institute on Drug Abuse (NIDA), the Office of Behavioral and Social Sciences Research (OBSSR), the National Institute of Mental Health (NIMH), the National Heart, Lung, and Blood Institute (NHLBI), the National Institute on Minority Health and Health Disparities (NIMHD), the National Cancer Institute (NCI), and the Tobacco Regulatory Science Program (TRSP) of the National Institutes of Health (NIH).

If you would like to be removed from our mailing list, please click unsubscribe from this list