scholarly journals Clinical development innovation in rare diseases: lessons learned and best practices from the DevelopAKUre consortium

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mattias Rudebeck ◽  
Ciarán Scott ◽  
Nicholas P. Rhodes ◽  
Christa van Kan ◽  
Birgitta Olsson ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Risk Sharing ◽  
Best Practice ◽  
Retention Rate ◽  
Lessons Learned ◽  
Success Factor ◽  
Patient Organisation ◽  
Clinical Drug Development ◽  
Study Participants ◽  
Key Success Factor

AbstractNew opportunities have arisen for development of therapies for rare diseases with the increased focus and progress in the field. However, standardised framework integrating individual initiatives has not been formed. We present lessons learned and best practice from a collaborative success case in developing a treatment for a rare genetic disease. Our unique consortium model incorporated several of the identified developments under one project, DevelopAKUre, truly bringing together academia, industry and patient organisations in clinical drug development. We found that the equal partnership between all parties in our consortium was a key success factor creating a momentum based on a strong organisational culture where all partners had high engagement and taking ownership of the entire programme. With an agreed mutual objective, this provided synergies through connecting the strengths of the individual parties. Another key success factor was the central role of the patient organisation within the management team, and their unique study participants’ advocacy role securing the understanding and meeting the needs of the clinical study participants in real-time. This resulted in an accelerated enrolment into the clinical studies with a high retention rate allowing for delivery of the programme with significantly improved timelines. Our project was partly funded through an external EU research grant, enabling our model with equal partnership. Further attention within the community should be given to establishing a functional framework where sustainable funding and risk sharing between private and public organisations allow for our model to be replicated.

Suggestions for Improving Initiation of Pipeline Projects

2004 ◽  
Author(s):  
Janice Thomas ◽  
Travis E. Stripling
Keyword(s):  
Risk Sharing ◽  
Stakeholder Management ◽  
Team Building ◽  
Success Factor ◽  
The Status ◽  
Health And Development ◽  
Technical Issues ◽  
The Right ◽  
Soft Management ◽  
Key Success Factor

Effective and successful project management of today’s pipeline projects is a challenging and complex task. For the most part, these complexities are not due to technical issues, but pertain to “soft management issues” (communications, team building/alignment, stakeholder management, etc.) that must be immediately and aggressively addressed during project initiation. That is, a key success factor for these projects is setting up for success, upfront at the very beginning, and ensuring the right resources and processes are in place to manage the “soft side” as the project progresses. This includes initiating continuing processes to check the status of the project team climate, interaction health, and development of a “risk sharing/monitoring” culture.

scholarly journals Budget transparency innovation in the Czech local government

2019 ◽  
Vol 13 (1) ◽  
pp. 23-32 ◽  
Author(s):  
Lucie Sedmihradská
Keyword(s):  
Best Practice ◽  
Media Analysis ◽  
Financial Information ◽  
Success Factor ◽  
Public Attention ◽  
The Czech Republic ◽  
Major Benefit ◽  
Accounting Software ◽  
First Time ◽  
Key Success Factor

Abstract Budget transparency innovations bring new extent and forms of transparency. The aim of the article is to explore the diffusion of budget explorers, that is, a budget transparency innovation extremely popular in the Czech Republic, and to evaluate their impact on voluntary budget information disclosed. Careful mapping of the diffusion using a survey of budget explores in 72 former Czech district towns and media analysis shows that the key success factor was its convenience for politicians, as it is attractive, easy to implement and up-to-date demonstration of their transparency. Budget explorers are nowadays a standard extension to accounting software, and their usage is evaluated in several government transparency competitions. The major benefit of the budget explorers is that they made for the first time publicly available detailed public financial information, changed the standard of best practice and drew some public attention. At the same time, they, unfortunately, narrowed the scope of the budget transparency debate by omitting the importance of the draft budget and introduction of performance measurement.

scholarly journals User knowledge factors that hinder the design of new home healthcare devices: investigating thirty-eight devices and their manufacturers

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Fan Yang ◽  
Abdullah Al Mahmud ◽  
Tao Wang
Keyword(s):  
End Users ◽  
Home Healthcare ◽  
Success Factor ◽  
User Research ◽  
The Public ◽  
Root Cause ◽  
Potential Applications ◽  
User Knowledge ◽  
Key Success Factor ◽  
Innovation Processes

Abstract Background The demand for home healthcare devices arises; however, many home healthcare devices on the market are not designed to reflect the needs and features of the end-users. This study explored the user knowledge factors that hindered the design of new home healthcare devices and the interrelationships between the factors. Methods The abovementioned factors were identified from analysing the project documents of thirty-eight carefully selected home healthcare devices produced by five manufacturers; followed by interviewing the thirty stakeholders playing key roles in developing the devices. Results The design of the home healthcare devices was influenced by (1) the user insights utilised in formulating project strategies; (2) the sources of user information; (3) the execution of user research; and (4) the formulation of the manufacturers’ principal innovation processes. Conclusions The users’ characteristics and needs were not sufficiently reflected in developing new home healthcare devices. One root cause was that the end-users were not perceived by the manufacturers as a key success factor in most cases, given that most of the devices were initiated following the public sector’s requests. Actual or potential applications of this study include the facilitation of the appropriate application of human factors methods in developing new home healthcare devices and the improvement of the user performance of the end-devices.

scholarly journals Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study

2021 ◽  
Vol 20 ◽  
pp. 160940692110167
Author(s):  
Snæfrídur Thóra Egilson ◽  
Linda B. Ólafsdóttir ◽  
Anna Sigrún Ingimarsdóttir ◽  
Freyja Haraldsdóttir ◽  
Ásta Jóhannsdóttir ◽  
...  
Keyword(s):  
Life Quality ◽  
Social Contexts ◽  
Lessons Learned ◽  
Control Group ◽  
Childhood Disability ◽  
Disabled Children ◽  
Sequential Mixed Methods ◽  
Study Participants ◽  
Design And Methods

The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.

A review of program evaluations in an Australian independent school: Participants’ perspectives

2014 ◽  
Vol 58 (3) ◽  
pp. 262-277
Author(s):  
Jeanne Maree Allen ◽  
Julie Rimes
Keyword(s):  
Program Evaluation ◽  
Academic Integrity ◽  
Best Practice ◽  
Independent School ◽  
Evaluation Methods ◽  
Questionnaire Data ◽  
School Program ◽  
Program Evaluations ◽  
Documentary Analysis ◽  
Study Participants

This article reports on ways in which one Australian independent school seeks to develop and sustain best practice and academic integrity in its programs through a system of ongoing program evaluation, involving a systematic, cyclical appraisal of the school’s suite of six faculties. A number of different evaluation methods have been and continue to be used, each developed to best suit the particular program under evaluation. In order to gain an understanding of the effectiveness of this process, we conducted a study into participants’ perceptions of the strengths and weaknesses of the four program evaluations undertaken between 2009 and 2011. Drawing on documentary analysis of the evaluation reports and analysis of questionnaire data from the study participants, a number of findings were generated. These findings are provided and discussed, together with suggestions about ways in which the conceptualisation and conduct of school program evaluations might be enhanced.

Chemical Deliquification of Unconventional Gas Wells

2014 ◽  
Author(s):  
K.. Francis-LaCroix ◽  
D.. Seetaram
Keyword(s):  
Natural Gas ◽  
Best Practice ◽  
Oil And Gas ◽  
Large Deviation ◽  
Cost Effective ◽  
Gas Production ◽  
Lessons Learned ◽  
Offshore Platforms ◽  
Gas Wells ◽  
Current Production

Abstract Trinidad and Tobago offshore platforms have been producing oil and natural gas for over a century. Current production of over 1500 Bcf of natural gas per year (Administration, 2013) is due to extensive reserves in oil and gas. More than eighteen of these wells are high-producing wells, producing in excess of 150 MMcf per day. Due to their large production rates, these wells utilize unconventionally large tubulars 5- and 7-in. Furthermore, as is inherent with producing gas, there are many challenges with the production. One major challenge occurs when wells become liquid loaded. As gas wells age, they produce more liquids, namely brine and condensate. Depending on flow conditions, the produced liquids can accumulate and induce a hydrostatic head pressure that is too high to be overcome by the flowing gas rates. Applying surfactants that generate foam can facilitate the unloading of these wells and restore gas production. Although the foaming process is very cost effective, its application to high-producing gas wells in Trinidad has always been problematic for the following reasons: Some of these producers are horizontal wells, or wells with large deviation angles.They were completed without pre-installed capillary strings.They are completed with large tubing diameters (5.75 in., 7 in.). Recognizing that the above three factors posed challenges to successful foam applications, major emphasis and research was directed toward this endeavor to realize the buried revenue, i.e., the recovery of the well's potential to produce natural gas. This research can also lead to the application of learnings from the first success to develop treatment for additional wells, which translates to a revenue boost to the client and the Trinidad economy. Successful treatments can also be used as correlations to establish an industry best practice for the treatment of similarly completed wells. This paper will highlight the successes realized from the treatment of three wells. It will also highlight the anomalies encountered during the treatment process, as well as the lessons learned from this treatment.

Countering Violent Extremism in Canada and Abroad

2018 ◽  
Author(s):  
Nora Abdelrahman Ibrahim
Keyword(s):  
Best Practice ◽  
Unintended Consequences ◽  
Lessons Learned ◽  
Policy And Practice ◽  
Far Right ◽  
Significant Development ◽  
The Us ◽  
Violent Extremism ◽  
Recent Trends ◽  
The Uk

Terrorism and violent extremism have undoubtedly become among the top security concerns of the 21st century. Despite a robust agenda of counterterrorism since the September 11, 2001 attacks, the evolution of global terrorism has continued to outpace the policy responses that have tried to address it. Recent trends such as the foreign fighter phenomenon, the rampant spread of extremist ideologies online and within communities, and a dramatic increase in terrorist incidents worldwide, have led to a recognition that “traditional” counterterrorism efforts are insufficient and ineffective in combatting these phenomena. Consequently, the focus of policy and practice has shifted towards countering violent extremism by addressing the drivers of radicalization to curb recruitment to extremist groups. Within this context, the field of countering violent extremism (CVE) has garnered attention from both the academic and policy-making worlds. While the CVE field holds promise as a significant development in counterterrorism, its policy and practice are complicated by several challenges that undermine the success of its initiatives. Building resilience to violent extremism is continuously challenged by an overly securitized narrative and unintended consequences of previous policies and practices, including divisive social undercurrents like Islamophobia, xenophobia, and far-right sentiments. These by-products make it increasingly difficult to mobilize a whole of society response that is so critical to the success and sustainability of CVE initiatives. This research project addresses these policy challenges by drawing on the CVE strategies of Canada, the US, the UK, and Denmark to collect best practice and lessons learned in order to outline a way forward. 

Sign in / Sign up

Export Citation Format

Share Document