In This Issue
- President’s Message
- Case Quiz
- Membership News
- Education and Professional Development
Joanne Hilden, MD
The beginning of a new academic year and emergence of fall colors in the trees herald ASPHO’s annual board midyear retreat. We meet to focus on strategic planning, assessing progress in all domains and activities.
Every objective and initiative the board undertakes in its strategic plan is driven by our mission statement and core purpose:
"ASPHO is a multidisciplinary organization dedicated to promoting optimal care of children and adolescents with blood disorders and cancer by advancing research, education, treatment and professional practice."
"To serve our members in their quest to improve the health and well-being of children with blood disorders and cancers."
During the retreat, I would like to focus on one of the more difficult aspects of our mission: advancing our advocacy efforts. ASPHO’s overarching objective for this domain is to “be the leading organization representing and advocating for pediatric hematology/oncology,” an ambitious goals for our society.
The Advocacy Committee is the focal point for advocacy leadership. The committee is relatively young and is still defining specific objectives and strategies. One of the committee’s duties is to develop programs and advocacy events for the annual meeting, encouraging open discussion and interaction with participants to discover important issues and perspectives. Outreach to fellows and junior faculty has resulted in adding two Early Career Council members to the committee and including early-career participants in 2014 Capitol Hill visits in conjunction with the Childhood Cancer Action Days.
In addition to producing programming for the annual meeting, ASPHO and its Advocacy Committee have been working with the American Academy of Pediatrics (AAP) on an advocacy agenda. The society entered into a collaborative agreement with AAP, gaining support from their government affairs team and infrastructure. AAP’s advocacy efforts are robust; their large membership supports a sophisticated federal affairs operation to advocate on behalf of children and AAP members. Our relationship with AAP is evolving, and we are seeking new ways to employ their advocacy team in support of our goals. This likely will be achieved by strengthening our cooperative relationship with the AAP Section on Hematology Oncology (SOHO) and establishing a joint advocacy committee. Negotiations with AAP are ongoing and we hope for a new affiliation model to support our work.
The current focus is to develop an advocacy agenda that meets both AAP SOHO's and ASPHO's priorities. Recently, SOHO and ASPHO leadership were surveyed to determine each group’s principal concerns, and a number of shared priorities were identified: National Institutes of Health (NIH) funding for research, drug shortages, transitions of care (insurance coverage, state coverage, workforce availability), clinical care insurance coverage (for trial participation, institutional overhead, patient involvement), and graduate medical education funding. The ASPHO Advocacy Committee also is seeking strategies to advocate for children and young adults with sickle cell disease through application of the medical home model, and hoping to collaborate with the Congressional Caucus and Sickle Cell Disease Association of America when opportunitites present themselves (note: no existing collaboration in please), and opportunities evoked by the release of the new NIH Heart, Lung and Blood Institute guidelines. See the article in this issue from Emily Riehm Meier and Deepika Darbari, who attended the briefing on the new guideline, which was endorsed by ASPHO.
Another potential topic for the Advocacy Committee is an initiative launched in April by U.S. Reps. Diana DeGette (D-CO) and Fred Upton (R-MI). The 21st Century Cures project attempts to craft legislation that would "focus on systemic improvements" in the medical research and clinical trials processes. Topics discussed during a roundtable with nearly two dozen members of Congress at a U.S. House of Representatives Energy and Commerce Committee meeting included investing in the next generation of scientists, incentivizing partnerships, exploring new approaches to clinical trials, and ensuring stable funding for research. More information about the new initiative can be found on the Energy and Commerce website.
Making a difference is very much on our minds as we prepare for the next iteration of our strategic plan. We would like to hear from you on these topics and other ideas you have for pediatric hematology/oncology advocacy efforts as we head into our midyear retreat.
In the meantime, get informed and involved. New ideas and analyses are generated daily in our field and in the broader field of medicine. Follow the issues that ignite your interest and passion, and consider ways you can become an advocate for your patients and your practice.
Hemolytic Disease of the Fetus and Newborn
The newborn female of a now gravida 4 para 3 mom with maternal history Rh D, C, and Jka (Kidd) alloimmunization during a prior pregnancy presented with anemia. Take the quiz.
Angela Scott, MD; Meghan Delaney, DO MPH
If you want to volunteer in the society and have experience or an interest in development, this is an important new initiative for you to consider!
ASPHO is convening a new Development Committee, established by the ASPHO Board of Trustees, to ensure that fundraising activities and initiatives effectively meet the needs of the society; are carried out in a manner consistent with the organization’s mission, vision, and values; and are efficiently and effectively coordinated with other marketing, communications, grants, and sales activities.
Under the leadership of Dr. ZoAnn Dreyer, the new committee will develop overarching strategies and plans to maximize revenues to the society through various channels, including grants, philanthropy, corporate support, member donations, and education grants. The goals of the committee include increasing support from existing funding sources and identifying new funding opportunities.
To volunteer please complete an application, including a brief statement outlining your interest and experience, by Monday, October 27.
The society membership voted to approve the recommended revisions to ASPHO bylaws.
The new version of the bylaws took effect on September 17 after 98% of voters recommended approval. The changes were proposed by the ASPHO Board of Trustees in consultation with the society’s legal counsel. Revisions included modifications to conform with state regulations and current association legal best practices, the creation of a new international membership category, and the addition of the ASPHO immediate past president as chair to the Nominating Committee.
The ASPHO Nominating Committee solicits your nominations for candidates for board and Nominating Committee positions. This is your chance to nominate ASPHO members who demonstrate leadership qualities and have a passion for your profession.
Three board trustees-at-large and two Nominating Committee member positions are available.
Please consider nominating yourself or a colleague for one of these positions.
For details regarding position responsibilities and to view the current ASPHO Board of Trustees and Nominating Committee, visit the ASPHO election page.
The deadline to submit a nomination is Friday, October 31. The elected candidates will take office at the 2015 Annual Meeting in Phoenix, AZ.
Program to Increase Diversity Among Individuals Engaged in Health-Related Research (PRIDE): Outcomes of the Functional and Applied Genomics of Blood Disorders Summer Institutes
Betty S. Pace, MD; Levi H. Makala, PhD DVM; Jenny Bing, MA; Juan González, PhD
Reports from the private and public sectors provide strong evidence that diversity remains an important challenge in biomedical and behavioral science research programs.
Although there have been improvements over several decades, statistics still paint a picture of significant inequity in biomedical research. A recent article, “Race, Ethnicity, and NIH Research Awards” demonstrated that African-American applicants are 10 percentage points less likely to receive National Institutes of Health (NIH) investigator-initiated funding compared with whites (Ginther et al., 2011). These results provided the stimulus for NIH leadership to develop new funding mechanisms to expand the pipeline of under-represented minority biomedical research trainees. There remains, however, a need to support current junior faculty to increase the diversity of under-represented investigators, thus enriching our nation’s biomedical research workforce.
In 2005, the National Heart Lung and Blood Institute (NHLBI) established the Summer Institute Program to Increase Diversity (SIPID) at three U.S. institutions (University of Texas at Dallas [UTD], Washington University at St. Louis, and SUNY Downstate Medical Center). In 2010 the program was renamed the Program to Increase Diversity Among Individuals Engaged in Health-Related Research (PRIDE) and was expanded to six institutions and a national Coordination Core. Under the leadership of Dr. Betty Pace, the SIPID program was funded at UTD. We trained 25 mentees, mainly at the assistant professor level, on conducting blood research. Subsequently, the PRIDE program was established at Georgia Regents University (GRU), where they recruited 23 mentees, for a total of 48 junior faculty members trained in both programs (representing about one-quarter of all trainees across all nine SIPID and PRIDE programs). Here we summarize results from the UTD-SIPID and GRU-PRIDE programs.
The program objectives were to
- Conduct the PRIDE 1 Summer Institute and establish mentorship committees based on the research interests of mentees and expertise of mentor(s). To achieve this objective we implemented a 2-week PRIDE 1 Summer Institute composed of a multidisciplinary didactic curriculum and hands-on-bench research training to expand the skill sets of mentees. We also conducted a grant-writing workshop in collaboration with NHLBI staff to develop strategies for grant submission and external funding.
- Conduct mentoring and networking activities to foster development of the mentor-mentee relationship. Through regular contact with the primary mentors and Mentoring Committee, we facilitated continuous mentoring activities and a midyear visit to the mentor’s institution to refine the mentee’s research project, grant-writing skills, career development, and hands-on-bench techniques. In addition, the mentees participated in a national workshop conducted by the NHLBI and PRIDE Coordination Core.
- Conduct the PRIDE 2 Summer Institute to continue development of grant-writing skills. The mentees participated in the PRIDE 2 Summer Institute for 10 days to gain additional bench research skills and skills to complete a grant application for submission to NHLBI or other extramural funding within 2 years of PRIDE program completion. We will evaluate the research and academic success of mentees for 10 years after SIPID and PRIDE completion.
Through the concerted effort of our program staff and national Coordination Core, we recruited 48 mentees to the UTD-SIPID and GRU-PRIDE programs. The most successful strategy for identifying applicants was referrals from past mentees and visits to our program-specific website. For both programs, the majority of mentees were female, African American, and at the assistant professor academic rank. Of the 20 medical doctors, 17 were pediatric hematologists conducting sickle cell disease research. PRIDE mentors were recruited from academic institutions across the country with diverse expertise and research focus.
A manuscript describing the outcomes of the three UTD-SIPID programs was published recently (Rice et al., 2014). Therefore, details of that program are not presented here. For the GRU-PRIDE program, several areas were evaluated using a Likert psychometric 1–6 point scale where 1 = strongly disagree and 6 = strongly agree, indicating support of the activity in question. The PRIDE participants evaluated the program’s overall success at capturing their interest, the program’s benefit, whether the program met the expectations of mentees, and the program’s value in peer networking, arriving at a mean score from 5.5 ± 0.22 to 5.94 ± 0.18. We also evaluated the PRIDE 1 and PRIDE 2 Summer Institute curriculum to ensure the goals of building research skills and grant funding of participants were achieved. Mentees felt that the lectures and hands-on-bench training sessions met their expectations for both Summer Institutes with a high overall instructor rating (5.58 ± 0.32) and course rating (5.45 ± 0.43). Similarly, ratings were obtained for effectiveness of teaching faculty and complexity of the materials.
The Mentorship Committee is a critical component of the PRIDE program. This committee comprises the PRIDE research mentor(s) and a career mentor based at the trainee’s home institution. At the time of matriculation into PRIDE, the mentee and mentor signed an agreement to complete all required aspects of the program. At the establishment of the SIPID program, we identified a cadre of experts in blood disorders research that had served as mentors for more than 8 years. By the first day of the Summer Institute, 80% of mentees-mentor were paired, with the mentor attending the first day of the program. Within a few weeks following the Summer Institute, the remaining mentee-mentor teams were established. During the 2-year training period, mentees communicated with their mentors on a monthly basis by phone, e-mail, or Skype, and with their Mentorship Committee quarterly. We evaluated the overall effectiveness of the Mentorship Committee on a Likert scale (1 = disagree to 7 = strongly agree) in areas including satisfaction with mentor and regularity of meetings; we observed mean scores from 5.92 ± 0.87 to 6.24 ± 0.72, respectively. In general, we achieved excellent mentee-mentor teams and effective Mentorship Committees.
The main goals of the SIPID and PRIDE programs are to broaden mentees’ research experience, enhance their grant-writing skills, and increase the number of funded grant proposals within 2 years of completing the second Summer Institute. To determine if we are achieving these goals we evaluated publications and grants funded. The SIPID mentees doubled the average number of papers published during the training period, and they have maintained an average 2.2 papers/mentee/year for up to 7 years. We also observed a 20% increase in papers published during PRIDE training.
The metric that directly demonstrates our goal is the success of mentees obtaining extramural grant funding. Data for funding success were collected from 2 years before matriculation, which showed the majority of mentees were funded as nonprincipal investigator (PI) on NIH grants or PI on non-NIH grants. Approximately 71% of SIPID mentees were awarded external funding, including R01 and NIH K-awards, 2 years after program completion. We are at a critical juncture in the path to independence for SIPID mentees depending on whether the R01 grant is renewed or the K-awards are converted to R01s.
Although early in their training, a review of the grants awarded to PRIDE mentees also was completed. Mentees entered the program with funding mainly as PI on non-NIH grants or non-PI on non-NIH grants; one mentee entered with a K99/R00 grant. During the Summer Institutes, one mentee was awarded an R01 grant as PI, and two mentees were awarded institutional K-12 awards. Thus far, 57% of mentees have external funding. Eleven grants submitted to NHLBI and the National Science Foundation were not funded, reflecting the highly competitive environment and low NIH paylines. We are continuing to collect data for grant funding for SIPID and PRIDE mentees.
In March 2014, a competitive renewal application was submitted to continue the PRIDE program at GRU. We expanded the program objectives by adding a mentee social network to facilitate research collaboration and peer support. We are pleased to report that the GRU-PRIDE II program was recently funded; we will start accepting preapplications November 1, 2014.
We would like to thank Dr. Treva Rice, Dr. Donna Jeffe, and Denise Dickerson from the national PRIDE Coordination Core for conducting the program evaluations and data analysis. Special gratitude goes to Dr. Rita Sarkar, our NHLBI PRIDE program officer, for conducting annual grant-writing workshops and offering dedicated support of the SIPID and PRIDE programs since their inception. We also thank Dr. Josephine Boyington for leadership and support as the NHLBI PRIDE program director.
- Ginther, D., Schaffer, W. T., Schnell, T., Masimore, B., Liu, F., Haak, L. L., & Kington, R. (2011). Race, ethnicity, and NIH research awards. Science, 6045, 1015–1019.
- Rice, T. K., Liu, L, Jeffe, D. B., Jobe, J. B., Boutjdir, M., Pace, B. S., Rao, D. C. (2014) Enhancing the careers of under-represented junior faculty in biomedical research: The Summer Institute Program to Increase Diversity (SIPID). Journal of the National Medical Association, 106, 50–57.
The 2015 ASPHO Call for Papers and Poster Abstracts is now open.
Accepted abstract authors will present at the 28th Annual Meeting in Phoenix, AZ, May 6–9, 2015.
Those who submit an abstract and meet eligibility requirements may submit an application for either a Young Investigator or Early Career award.
- Young Investigator Award
- Recognizes excellence in research in the pediatric hematology/oncology profession.
- Early Career Travel Stipend Award
- Provides funding for deserving young investigators to attend the 2015 Annual Meeting.
The deadline to submit an abstract is Monday, January 5, 2015.
ASPHO webinars are a great way for you to increase your awareness and knowledge on particular issues that directly influence you and your profession.
ASPHO’s new Knowledge Center will allow you to access past webinar recordings and register for upcoming webinars.
Upcoming Live Webinars
Don’t miss out on the next webinar on severe aplastic anemia on Wednesday, November 19.
Speaker David Margolis, MD, will use the "How I Treat" approach, emphasizing practical aspects of managing severe aplastic anemia. Areas of focus include diagnosis, treatment challenges, controversies, and transplantation issues. Angela Punnett, MD FRCPC, will serve as moderator.
The 2014–2015 webinar series includes the following recorded webinars:
"One of the best courses I have ever attended!" — 2013 Review Course attendee
ASPHO’s 2015 Pediatric Hematology/Oncology Review Course will be held February 5–8 in Dallas.
The course is designed for
- physicians planning to take the American Board of Pediatrics (ABP) examination for initial certification in pediatric hematology/oncology
- those preparing for Part 3 of ABP’s Program for Maintenance of Certification in Pediatric Subspecialties
- fellows in training.
The 2015 course will be taught by subject matter experts, many of whom are national leaders in the pediatric hematology/oncology field.
ASPHO’s 28th Annual Meeting will take place May 6–9, 2015, in Phoenix, AZ!
The 2015 annual meeting will have something for everyone, no matter what career level, and the educational program will consist of more sessions than ever, including
- a presidential symposium on risk aversion
- speed mentoring
- two poster sessions
- four special interest group meetings
- expanded maintenance of certification learning opportunities
- opportunities for additional concurrent platform sessions
- a 2014 pediatric hematology/oncology workforce session.
Additional programming information will be available in the upcoming weeks at www.aspho.org/annualmeeting. See you in Phoenix!
The Sickle Cell Disease Association of America (SCDAA) is sponsoring a White House petition to support federal funding for sickle cell disease (SCD).
The Reauthorization of the Sickle Cell Treatment Act – Bill H.R. 5124 will expand the national newborn screening program, develop a comprehensive adult transition program, continue public surveillance, expand research efforts and establish up to 25 sickle cell treatment centers throughout the US all in an effort to support the creation of a sustainable comprehensive model of care for individuals affected by SCD.
The SCDAA goal was to reach 100,000 signatures in four weeks. The goal was met on Monday, October 20. This is an important step for increased awareness of sickle cell disease in our communities. Please continue to spread the word as the petition closes for signatures on Wednesday, October 22.
Emily Riehm Meier, MD, and Deepika Darbari, MD
The National Heart, Lung, and Blood Institute (NHLBI) recently released evidence-based guidelines for the management of sickle cell disease (SCD) assembled by an expert panel.
The guidelines are intended to be used by primary care providers and specialists when caring for patients with SCD. Available evidence for best practices was used, when available, to develop the guidelines. Each guideline includes descriptions of the strength of the recommendation and the quality of supporting evidence. When such evidence was not available, expert consensus and guidelines from other organizations were used. Many knowledge gaps still exist, which highlights the need for higher levels of funding for research into SCD mechanisms and new therapeutic targets that will help SCD patients live longer, healthier lives.
ASPHO participated in the development of the guideline by providing peer review and comments on both the draft and final versions. Expert reviewers included Dr. Kim Smith-Whitley, Dr. Peter Lane, and Dr. Gerald Woods. The ASPHO Board of Trustees voted to endorse the NHLBI guideline based on our review committee’s recommendations.
On September 15, the American Society of Hematology (ASH) cohosted a briefing on Capitol Hill to highlight the need for improved research funding for SCD. U.S. Reps. Danny Davis (D-IL) and Charles Rangel (D-NY), cochairs of the Congressional Sickle Cell Disease Caucus, offered welcoming remarks. The briefing was chaired by Dr. Alexis Thompson, ASH councillor and pediatric hematologist at Ann & Robert H. Lurie Children’s Hospital in Chicago, IL. Dr. Thompson highlighted key points from the NHLBI SCD guidelines and outlined ASH’s research priorities for SCD. The panel included Dr. Gary Gibbons, director of the NHLBI, who reviewed the NHLBI SCD research portfolio. Dr. Carlton Haywood, from Johns Hopkins School of Medicine and the Berman Institute of Bioethics, provided a SCD patient perspective and the importance of the new guidelines to SCD patients. Dr. Kim Smith-Whitley, chief medical officer of the Sickle Cell Disease Association of America and pediatric hematologist at Children’s Hospital of Philadelphia, moderated the question and answer portion of the briefing.
The briefing was well-attended by congressional staffers, several of whom asked insightful questions about SCD and the effects of the disease on patients and families. ASPHO members also were present for this important meeting. When asked about the possibility of increasing SCD funding, Dr. Gibbons highlighted the multidisciplinary work that is funded by NHLBI with the goal of improving the care of patients with SCD. Overall, the briefing was effective in highlighting the impact that SCD has on patients and urging Congress to improve funding for medical research.
The International Society on Thrombosis and Haemostasis (ISTH) launched the inaugural World Thrombosis Day on October 13 and invited ASPHO to partner on efforts to increase awareness of the significance, risks, signs, and symptoms of venous thromboembolism (VTE).
According to a public survey conducted on behalf of ISTH, "only an average one-fourth of of respondents were aware that hospital stays, surgery, and cancer were the major risk factors for VTE."
The ISTH Steering Committee for World Thrombosis Day has published the review article "Thrombosis: a major contributor to the global disease burden."
For patients and their families, most care decisions tend to be made toward the end of life.
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life is a consensus report from the Institute of Medicine (IOM) that discusses key findings and recommendations for clinicians, care givers, support staff, and more. Experts found that improving the quality and availability of medical and social services for patients and their families could enhance their quality of life through the end of life and may contribute to a more sustainable care system.
The full report can be found on the IOM website.