scholarly journals National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1904-1904
Author(s):  
Maria E Santaella ◽  
Michelle L Witkop ◽  
Kevin Mills ◽  
Michael Recht ◽  
Donna DiMichele ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Research Priorities ◽  
Community Support ◽  
Science Research ◽  
Community Survey ◽  
Bleeding Disorders ◽  
Community Needs ◽  
The Future ◽  
Working Groups ◽  
Remote Participation

Abstract Background: The inherited bleeding disorder (IBD) community has witnessed significant advances in care, yet important gaps persist, particularly in rare disorders and underserved populations. An initiative spearheaded by the National Hemophilia Foundation (NHF) and shaped by the patient community aims to accelerate progress through a national research blueprint. The blueprint is being designed to identify and guide research priorities toward those areas that most significantly impact the lives of individuals affected today and articulate clearly defined opportunities to make the greatest impact for the future. Methods: NHF has enlisted individuals with IBDs as subject matter experts (SMEs) to guide this initiative by elevating the most pressing issues affecting them today and informing expert discussions on actionable research priorities for the future. SME insights have been collected through listening sessions, a cross-community survey, and participation in multi-disciplinary working groups. The NHF State of the Science Research Summit (SOS) in September 2021 will address the input of the working groups and will also feature patient vignettes to illustrate today's unmet needs and contextualize the research priorities identified to address them. As part of this interactive Summit, SMEs from traditionally underrepresented patient populations are also being enlisted to participate in remote participation groups (RPGs) with the goal of soliciting input that further tailors the research priorities to the needs of these populations. The RPGs will be comprised of individuals with bleeding disorders or their caregivers who represent specific populations by race/ethnicity (for example, African Americans, Asian Americans, Indigenous persons, Mexican and Central American Hispanic individuals, etc.). Within each group, NHF will aim to include individuals with diverse experiences based on their IBD, barriers related to access to care, gender and sexual orientation. During each session, the moderated RPGs will participate in the live summit, discuss the expert dialogue, and share real-time perspectives and comments about how the content addresses, or not, their specific community needs. The expert SOS panel will then have the chance to address their comments. The commentary from these sessions will be included in the NHF blueprint to define the research path forward for the community. The RPGs are also expected to be reconvened in Spring 2022 to review and improve upon the opportunities identified in the blueprint. Results: NHF has enlisted broad and diverse community support to ensure the blueprint accurately represents the opportunities to create meaningful and lasting impact for individuals with IBDs. In total, 42 patients and caregivers participated in listening sessions; 125 contributed to the community survey; 15 are participating in the Summit working groups and approximately 200 are being enlisted for the remote participation groups. The themes to be addressed during the SOS reflect the input provided by the SMEs and health professionals (see Table 1). Conclusions: Actively soliciting the patient community's views is central in our process to advance research in IBDs. By enlisting the participation of historically underserved community segments, this effort aims to address some of the most persistent and pressing issues affecting the IBD community today. Specific insights from the RPG participation in the Summit will be included in the presentation. This blueprint, which will guide the U.S. research community, could help fundamentally redefine the experience of diverse populations living with these disorders. Figure 1 Figure 1. Disclosures Witkop: Teralmmune, Inc.: Consultancy. Recht: Octapharma: Consultancy; Novo Nordisk: Consultancy; Pfizer: Consultancy; Sanofi: Consultancy; Takeda: Consultancy; uniQure: Consultancy; Foundation for Women and Girls with Blood Disorders, Partners in Bleeding Disorders: Speakers Bureau; American Thrombosis and Hemostasis Network: Current Employment; Oregon Health & Science University: Current Employment; Kedrion: Consultancy; Hema Biologics: Consultancy; Genentech: Consultancy; CSL Behring: Consultancy; Catalyst Biosciences: Consultancy. Valentino: Spark: Ended employment in the past 24 months.

scholarly journals National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4952-4952
Author(s):  
Michelle L Witkop ◽  
Michael Recht ◽  
Donna DiMichele ◽  
Kevin Mills ◽  
Leonard A. Valentino ◽  
...  
Keyword(s):  
Community Involvement ◽  
Subject Matter ◽  
Underserved Populations ◽  
Research Question ◽  
Research Priorities ◽  
Research Progress ◽  
Bleeding Disorders ◽  
Subject Matter Experts ◽  
Allied Health Professionals ◽  
Working Groups

Abstract Background: An ambitious initiative underway in the inherited bleeding disorder (IBD) community aims to create a national research blueprint that can help accelerate research progress and address important gaps in care, particularly within rare disorders and underserved populations. Led by the National Hemophilia Foundation (NHF), the effort is defined by input from across the community, including research leaders, patient subject matter experts (SMEs), caregivers, allied health professionals and specialists, and industry. Two foundational principles of the blueprint are that a) it must deliver on key issues that most significantly impact the lives of those affected by an IBD, and b) the priorities defined are relevant and actionable in order to provoke real and lasting changes in the care paradigm. Methods: To ensure the blueprint accurately reflects the most pressing needs from across the community, NHF has enlisted the support of diverse segments of the population throughout the process. Listening: NHF coordinated a comprehensive, community-wide listening exercise, including focus groups, virtual listening sessions, and consumer and professional surveys, to collect insights that have shaped and guided the blueprint development. Engagement: Representatives from across the IBD community have been enlisted to participate in the development process through enrollment in one of six interdisciplinary working groups (WGs), each focusing on broad themes raised during the listening exercises. (Table 1) In total, 164 individuals are participating in the WGs, including chapter representatives, allied healthcare providers, researchers, federal partners and other IBD organizations. Each WG also features experts outside the IBD community who can introduce innovations from other fields. Finally, each WG includes the participation of subject matter experts (SMEs), individuals affected by bleeding disorders who provide personal perspectives on the value and potential impact of the proposed research priorities. NHF is actively supporting these groups with regular engagement, guidance, and recommendations while encouraging robust dialogue to distill critical priority research areas. To ensure the blueprint is well defined and actionable, NHF has devised a rigorous development and refinement process. Feasibility Assessment: Together with expert advisers, NHF has defined a set of feasibility criteria to help the WGs address potential opportunities based on three key areas: (see Figures 1 and 2) Feasibility assesses the difficulty in answering the proposed question, including required expertise, infrastructure, and resources.Impact estimates the change we can foster through the priority.And risk considers the challenges of the research question, such as the risk/benefit ratio for novel strategies and any ethical considerations. Each research priority or model is scored based on these areas, and the combined evaluation will determine how they are included and prioritized in the blueprint. Summit: Upon completion of the WG assessments, NHF will bring the community together for a State of the Science (SOS) Research Summit, September 12-15, 2021, during which each WG will summarize their recommendations for live, interactive discussion. During each session, panels will discuss the recommendations and collect feedback from community participants, as well as from remote participation groups comprised of representatives from underserved segments of the population. Results: The discussions from the working groups and Research Summit will be consolidated into a series of manuscripts and published as a community-driven national research blueprint in mid-2022. The voices of individuals affected by IBDs have been the central driver in this process, from the listening activities and WGs to the planned SOS, and the community will continue to champion the efforts defined in the blueprint. Conclusions: This initiative represents an opportunity to catalyze impactful change in the treatment of IBDs. To ensure its success, NHF has methodically enlisted broad community involvement and driven a rigorous prioritization process in order to identify specific and actionable topics that will help guide research plans for the IBD community. Our hope is that this blueprint will help shepherd advances in care that could fundamentally redefine the experience of living with these disorders. Figure 1 Figure 1. Disclosures Witkop: Teralmmune, Inc.: Consultancy. Recht: Sanofi: Consultancy; Octapharma: Consultancy; Novo Nordisk: Consultancy; Foundation for Women and Girls with Blood Disorders, Partners in Bleeding Disorders: Speakers Bureau; American Thrombosis and Hemostasis Network: Current Employment; Oregon Health & Science University: Current Employment; Genentech: Consultancy; Hema Biologics: Consultancy; CSL Behring: Consultancy; Takeda: Consultancy; uniQure: Consultancy; Catalyst Biosciences: Consultancy; Pfizer: Consultancy; Kedrion: Consultancy. Valentino: Spark: Ended employment in the past 24 months.

Current Postvention Research and Priorities for the Future

Crisis ◽  
2017 ◽  
Vol 38 (3) ◽  
pp. 202-206 ◽  
Author(s):  
Karl Andriessen ◽  
Dolores Angela Castelli Dransart ◽  
Julie Cerel ◽  
Myfanwy Maple
Keyword(s):  
Social Life ◽  
Online Survey ◽  
Research Priorities ◽  
Future Research ◽  
Physical And Mental Health ◽  
Intercultural Collaboration ◽  
The Social ◽  
The Future ◽  
Suicide Bereavement ◽  
Ethical Approval

Abstract. Background: Suicide can have a lasting impact on the social life as well as the physical and mental health of the bereaved. Targeted research is needed to better understand the nature of suicide bereavement and the effectiveness of support. Aims: To take stock of ongoing studies, and to inquire about future research priorities regarding suicide bereavement and postvention. Method: In March 2015, an online survey was widely disseminated in the suicidology community. Results: The questionnaire was accessed 77 times, and 22 records were included in the analysis. The respondents provided valuable information regarding current research projects and recommendations for the future. Limitations: Bearing in mind the modest number of replies, all from respondents in Westernized countries, it is not known how representative the findings are. Conclusion: The survey generated three strategies for future postvention research: increase intercultural collaboration, increase theory-driven research, and build bonds between research and practice. Future surveys should include experiences with obtaining research grants and ethical approval for postvention studies.

Psychophysiology, cognition, and political differences

2021 ◽  
Vol 40 (2) ◽  
pp. 137-141 ◽  
Author(s):  
Jordan Mansell ◽  
Allison Harell ◽  
Elisabeth Gidengil ◽  
Patrick A. Stewart
Keyword(s):  
Political Science ◽  
Life Sciences ◽  
Science Research ◽  
Open Science ◽  
Common Theme ◽  
Special Issue ◽  
The Future ◽  
Research Questions ◽  
Political Differences ◽  
Science Framework

AbstractWe introduce the Politics and the Life Sciences special issue on Psychophysiology, Cognition, and Political Differences. This issue represents the second special issue funded by the Association for Politics and the Life Sciences that adheres to the Open Science Framework for registered reports (RR). Here pre-analysis plans (PAPs) are peer-reviewed and given in-principle acceptance (IPA) prior to data being collected and/or analyzed, and are published contingent upon the preregistration of the study being followed as proposed. Bound by a common theme of the importance of incorporating psychophysiological perspectives into the study of politics, broadly defined, the articles in this special issue feature a unique set of research questions and methodologies. In the following, we summarize the findings, discuss the innovations produced by this research, and highlight the importance of open science for the future of political science research.

Research: Evaluation and Needs

1989 ◽  
Vol 6 (2) ◽  
pp. 122-124
Author(s):  
Klaus K. Urban
Keyword(s):  
Gifted Education ◽  
Research Evaluation ◽  
Research Priorities ◽  
The Future ◽  
Significant Research

This article summarizes the results of a questionnaire which sought to elicit some consensus on significant research and researchers in Gifted Education to date and recommended research priorities for the future.

Well funded and dangerous: assessing the Islamic State’s financing operations

2017 ◽  
Vol 20 (2) ◽  
pp. 159-171 ◽  
Author(s):  
Michael Tierney
Keyword(s):  
Local Population ◽  
Community Support ◽  
International Community ◽  
Islamic State ◽  
Content Type ◽  
Terrorist Financing ◽  
Funding Sources ◽  
The Future ◽  
Transnational Network ◽  
Base Of Support

Purpose The existing literature on Islamic State of Iraq and Syria (ISIS) has thus far focused on the group’s contemporary or previous financing activities. However, there has not been an analysis of the ways in which ISIS’ funding is likely to change moving forward now that it has come under international scrutiny. The purpose of this paper is to assess the ways in which ISIS’ funding is likely to evolve in the future and to also suggest methods for combating its financing activities. Design/methodology/approach The paper is theoretical in nature. By assessing the existing literature on terrorist financing, it is apparent that terrorist organizations alter their funding sources and methods after coming under intense international scrutiny. Therefore, two hypotheses are put forth for the future of ISIS’ funding activities: the group will become more effective at building social support among its local population, thereby consolidating is funding sources and methods within Syria and Iraq; and the group will increasingly branch out, searching for sources from a transnational network, as its base in Syria and Iraq begins to deteriorate. Findings Community support is essential for sustaining a terrorist network. As a result, it is likely that ISIS will increasingly seek funding from a transnational network as its base of support in Iraq and Syria begins to deteriorate. There is also a distinct third possibility that the group will be able to consolidate its base while also moving abroad for financial support. This third option presents the most complicated outcome for the international community in its fight against ISIS. Originality/value This study fills a gap in the literature on terrorist financing, particularly with regards to ISIS, to assist the international community in its fight against the group both now and moving into the future.

scholarly journals Invasive versus Non-Invasive Neuroprosthetics of the Upper Limb: Which Way to Go?

Prosthesis ◽  
2020 ◽  
Vol 2 (3) ◽  
pp. 237-239 ◽  
Author(s):  
Andreas Otte
Keyword(s):  
Upper Limb ◽  
Research Priorities ◽  
Invasive Approach ◽  
Non Invasive ◽  
The Future ◽  
The Right

In this editorial, a topic for general discussion in the field of neuroprosthetics of the upper limb is addressed: which way—invasive or non-invasive—is the right one for the future in the development of neuroprosthetic concepts. At present, two groups of research priorities (namely the invasive versus the non-invasive approach) seem to be emerging, without taking a closer look at the wishes but also the concerns of the patients. This piece is intended to stimulate the discussion on this.

Forestry Research Advisory Council of Canada Annual Report for 1990

1991 ◽  
Vol 67 (4) ◽  
pp. 427-433
Keyword(s):  
Research Priorities ◽  
Advisory Council ◽  
Forest Economics ◽  
Forest Resource ◽  
Forest Research ◽  
Forestry Research ◽  
Research Programs ◽  
The Future ◽  
Canadian Council ◽  
Forest Managers

The Forestry Research Advisory Council of Canada (FRACC) advises Forestry Canada on national forest research priorities and policies. This report covers calendar 1990, during which FRACC held four meetings and visited four Forestry Canada research centres.Once again FRACC prepared a national overview of research priorities with the assistance of the provincial and territorial forest research advisory groups. This appeared in the February 1991 Forestry Chronicle of the Canadian Institute of Forestry. Twenty-three new research priorities were identified in the 1990 overview. Many of the new items were related to the need for predictive models, better resource and land use decision methods, socioeconomic studies, and studies on climate change. This reflects the increasing attention forest managers are giving to public attitudes on resource and environmental matters. At the same time, the forest managers' more traditional long-term concerns about protecting, harvesting, and regenerating forests are still prominent in research priorities. The importance of the Forest Resource Development Agreements in funding forest research was again emphasized.As a result of its deliberations in 1990, Council makes the following recommendations:1. Forestry Canada should ensure that a broad spectrum of forest stakeholders have input to its forest research advisory process, and should encourage other agencies to do likewise.2. Forestry Canada should seek every opportunity to connect its research work with site classification systems. This will broaden the use of research results in ways that maximize their application without having them misapplied in inappropriate situations.3. Forestry Canada should strengthen its linkages with the universities and urge them to do more to broaden their search for graduate students by emphasizing the very real challenges in forestry. Forestry Canada should also consider seconding scientists to universities for two to three years to alleviate a shortage of specific skills and to further the training of specialists in those disciplines.4. Forestry Canada should make every effort to develop other techniques and approaches to enhance cooperative programs along the lines of the National Science and Engineering Research Council partnership model.5. In setting up cooperative programs of research with industry, Forestry Canada should ensure that the participating companies are fully aware of the steps necessary to qualify for favorable tax treatment for their contributions to research programs.6. Forestry Canada should carefully examine its forest economics and policy program to assess its adequacy and to determine whether sufficient linkage has been established with the provinces, industry, and the universities. An in-depth program review of this subject should be undertaken, with full program documentation being assembled and made available to FRACC and Forestry Canada clients and cooperators.7. A serious effort should be made to raise the profiles of Forestry Canada's two specialized institutes so that their role, particularly in relation to environmental concerns, is more widely appreciated in forestry and environmental circles. A change of names should be considered. Drawing on the views of scientists and staff, Forestry Canada should seek alternatives that would give much more stress to the ideas of sustainable development and ecological balance.8. The practice of consulting with staff and involving them in the planning and execution of research programs should be reinforced and firmly embedded in the management culture of Forestry Canada.9. Forestry Canada should actively involve its leading scientists in developing national strategies and plans and in developing research networks.In its work program for 1991, Council will:1. Continue to examine the factors affecting the supply of young scientists and the elements that make for a productive research climate.2. Continue the input of various forest stakeholders to the deliberations of Council so that the forces shaping the future demands on the forest ecosystem can be better understood.3. Identify emerging regional and national issues and priorities in forestry research.4. Continue to work with provincial and territorial research advisory bodies to assemble a national overview of forest research priorities for the Canadian Council of Forest Ministers.5. Study the implications for Forestry Canada's research program of the following reports:(a) The Report of the Standing Committee of the House of Commons on Fisheries and Forestry entitled Forests of Canada: The Federal Role (the Bird Report).(b) The Green Plan of Environment Canada.(c) The report by Pierre Lortie on science policy and the organization of science in Canada.(d) Forestry Canada's report to parliament.6. Make input to developing the new Forest Sector Strategy for Canada due for completion in March 1992.7. Obtain and review an action plan for the forest economics program of Forestry Canada.8. Hold a "think-tank" session to explore in broad terms what the future holds for forest resource management in Canada and the world, and to attempt to assess what this means for forest research at present and in the near future.9. Study the terms of reference of FRACC and make recommendations as required to Forestry Canada.

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