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.
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).
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
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.
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
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.
Carol M. Hamilton, PhD Principal Investigator Tabitha Hendershot Co-Investigator Wayne Huggins, PhD Co-Investigator 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).