Research Studies

Dr. Jonathan Roberts is currently a pediatric hematology and oncology fellow with the Medical College of Wisconsin and the Children's Hospital of Wisconsin. His fellowship mentor will be Joan Gill, MD, Professor of Pediatrics at the Medical College of Wisconsin and Director of the Comprehensive Center for Bleeding Disorders (CCBD) at the BloodCenter of Wisconsin. Roberts graduated with honors from Greenville College, Illinois, and received his MD from Southern Illinois University School of Medicine. He did his residency in Pediatrics at the University of Illinois at Peoria and Children's Hospital of Illinois, where he also distinguished himself, receiving awards of excellence for critical care and research. During his pediatric residency, Roberts worked with Dr. Michael Tarantino to initiate a clinical research trial to assess the role of FXIII on intraventricular hemorrhage in premature, low birth weight infants. As a NHF-Baxter Clinical Fellow, Roberts will receive focused training and gain clinical experience through the hemostasis clinics at CCBD and further develop his research skills in a project to develop a new ELISA-based assay for assigning VWF phenotype. Roberts has plans to pursue a Master's Degree in Clinical and Translational Science. His goal is to become an expert physician/scientist with a long-term career focus on hemophilia, and other bleeding and clotting disorders.

As technology advances and provides electronic tools for enhancing communication by phone and computer, health care providers are finding ways to adapt these tools into patient care. Telehealth is the use of electronic information and telecommunications technologies to support long-distance clinical health care. For patients with hemophilia who experience a bleed in the home setting, telehealth has the potential to help the patient, family, and health care provider assess what is going on and develop the best plan of care, all while the patient stays in the home setting. In this clinical project, we will use the telehealth resources available at our institution to partner with patients and families with severe hemophilia with a high risk of bleeding episode who also have a home computer with a camera and internet access. We want to find out more about how many patients have these home resources, how to use video-conferencing when managing a bleed and what patients, families, and health care staff think about using video conferencing. This will help us plan future research using telehealth video-conferencing for a larger group of hemophilia patients.

Dr. Tammuella Chrisentery-Singleton is an Assistant Professor of Clinical Pediatrics at Tulane University and is board certified in pediatric hematology/oncology. She will receive training under the mentorship of Cindy Leissinger, MD, Chief, Section of Hematology & Medical Oncology at Tulane University School of Medicine and Director of the Louisiana Center for Bleeding and Clotting Disorders. Chrisentery-Singleton graduated with honors from Xavier University, received her MD from Louisiana State University and then completed her pediatric residency at the University of Miami. Following residency, she completed pediatric hematology/oncology fellowship training at Johns Hopkins University, where she worked with Dr. Jim Cassella and developed a serious interest in disorders of coagulation, particularly hemophilia. After her fellowship training, she was recruited to join the pediatric hematology/oncology faculty at LSU and Children's Hospital of New Orleans. In 2010, Chrisentery-Singleton accepted a position at Tulane University because of her desire to receive more training and spend more time in the specialized coagulation medicine program. As an NHF-Baxter Clinical Fellow, she will receive dedicated training in bleeding and clotting disorders for both children and adult patients, along with mentoring in clinical research related to bleeding disorders. She will also continue her work on several ongoing clinical trials, and pursue her project in developing models to better determine pharmacokinetic parameters with a minimal number of needle sticks in pediatric patients with hemophilia. Her goals are to steadily improve her knowledge and skills in caring for patients with coagulation disorders, and continue building her academic career in coagulation medicine.

Objective:

Who better to understand and help advocate for the bleeding disorders community than those who live it every day? Step Up Reach Out (SURO) was created to help foster the next generation of leaders in the bleeding disorders community.

Method:

SURO is an international leadership program designed to help build tomorrow's leaders in the bleeding disorders community. The program was created by the University of Texas Health Science Center, Gulf States Hemophilia and Thrombophilia Center (UTHS) in 2007 with support from Bayer HealthCare.

SURO brings together young people (18-24 years old) from around the world for learning, personal growth and collaboration. This one-year program consists of two sessions of leadership training, activities focused on developing communications skills, and individual and group projects. During the time between the two sessions, participants are asked to identify an area in their communities for which they would like to step up and define an action plan, putting into practice the skills they have acquired. They continue to learn from and support one another through the SURO Alumni Network.

Summary:

To date, the SURO program has trained nearly 100 individuals from more than 20 countries, ranging from the US to Mexico, India and beyond. SURO alumni have come out of the program ready to put their action plans to the test, developing programming to support their local community needs.

Conclusions:

SURO helps participants build self-esteem, develop concrete thinking abilities and make decisions that will help make them become leaders in their own right.

Objective:

 

Few online resources are available for teens and young adults living with hemophilia. Frankly.net aspires to serve as a candid, trusted resource on real issues of concern for this age group. Our online forum provides news, tips and information to help young adults with hemophilia live the lives they choose.

Method:

In 2008, an editorial board was established to guide the creation of Frankly.net, an online magazine targeting young men with hemophilia. Board members include experts in the areas of healthcare, social work and advocacy, and two are young men living with hemophilia.

Frankly.net content is controlled exclusively by the editorial board and sponsored by Bayer Healthcare with the goal of casting light on often taboo subjects within the community, such as sexuality, drugs and depression. An editorial calendar is maintained to ensure fresh content is published regularly.

Frankly.net is mobile-optimized and includes rich video content. Users are encouraged to keep up with the latest content by following @FranklyNet on Twitter.

Summary:

Since its inception, the editorial board has guided the creation of more than 80 stories. Articles include topics that resonate with young adults such as travel, entertainment, relationships and sex. Engaging video stories are also available in English and Spanish.

To date, Frankly.net has seen nearly 7,500 visitors from more than 125 countries across the globe, including the US, India, Germany, Canada.

In 2013, Frankly.net underwent a site makeover, re-launching with a new look and feel. Plans to further engage with an international audience are also underway. Korea launched a fully translated site in early 2013 under the guidance of a Korean editorial board. A Latin American version is in development and content from the site has been repurposed and translated in a dozen countries.

Conclusions:

Frankly.net is a unique resource for teenagers and young adults with hemophilia around the world. It continues to push boundaries as a way to help young men navigate the ups and downs of living with hemophilia.

In the long-term, Dr. Ivanciu's goals include the establishment of an independent research laboratory to focus on better understanding the pathological consequences of disruptions in the hemostatic balance. She believes that, as a past JGP Fellow, she is in a unique position to make meaningful contributions to the field of hematology and possibly help advance new therapies for the treatment of hemophilia.