Rare Diseases Research and Practice

2014 ◽  
pp. 234-256 ◽  
Author(s):  
Agata Polizzi ◽  
Antonio Balsamo ◽  
Milva Orquidea Bal ◽  
Domenica Taruscio
Keyword(s):  
Rare Diseases ◽  
Research And Practice

The Collaborative Network Approach: a model for advancing patient-centric research for Castleman disease and other rare diseases

2019 ◽  
Vol 3 (1) ◽  
pp. 97-105
Author(s):  
Mary Zuccato ◽  
Dustin Shilling ◽  
David C. Fajgenbaum
Keyword(s):  
Rare Diseases ◽  
Treatment Options ◽  
Castleman Disease ◽  
High Impact ◽  
Collaborative Network ◽  
Network Approach ◽  
Grant Applications ◽  
Research Questions ◽  
Novel Strategy ◽  
Patient Centric

Abstract There are ∼7000 rare diseases affecting 30 000 000 individuals in the U.S.A. 95% of these rare diseases do not have a single Food and Drug Administration-approved therapy. Relatively, limited progress has been made to develop new or repurpose existing therapies for these disorders, in part because traditional funding models are not as effective when applied to rare diseases. Due to the suboptimal research infrastructure and treatment options for Castleman disease, the Castleman Disease Collaborative Network (CDCN), founded in 2012, spearheaded a novel strategy for advancing biomedical research, the ‘Collaborative Network Approach’. At its heart, the Collaborative Network Approach leverages and integrates the entire community of stakeholders — patients, physicians and researchers — to identify and prioritize high-impact research questions. It then recruits the most qualified researchers to conduct these studies. In parallel, patients are empowered to fight back by supporting research through fundraising and providing their biospecimens and clinical data. This approach democratizes research, allowing the entire community to identify the most clinically relevant and pressing questions; any idea can be translated into a study rather than limiting research to the ideas proposed by researchers in grant applications. Preliminary results from the CDCN and other organizations that have followed its Collaborative Network Approach suggest that this model is generalizable across rare diseases.

Not at Imminent Risk

Crisis ◽  
2015 ◽  
Vol 36 (6) ◽  
pp. 459-463
Author(s):  
Kate Monaghan ◽  
Martin Harris
Keyword(s):  
Early Intervention ◽  
Suicidal Ideation ◽  
Intervention Strategies ◽  
Group Method ◽  
Narrative Approach ◽  
Complex Issue ◽  
Research And Practice ◽  
Client Group ◽  
Types Of Information ◽  
Imminent Risk

Abstract. Background: Suicide is a pervasive and complex issue that can challenge counselors through the course of their careers. Research and practice focus heavily on crisis management and imminent risk rather than early intervention strategies. Early intervention strategies can assist counselors working with clients who have suicidal ideation, but are not at imminent risk, or with clients whose risk factors identify them as having a stronger trajectory for suicidal ideation. Aims: This systematic literature review examines the current literature on working with clients with suicidal ideation who are not at imminent risk, to ascertain the types of information and strategies available to counselors working with this client group. Method: An initial 622 articles were identified for analysis and from these 24 were included in the final review, which was synthesized using a narrative approach. Results: Results indicate that research into early intervention strategies is extremely limited. Conclusion: It was possible to describe emergent themes and practice guidelines to assist counselors working with clients with suicidal ideation but not at imminent risk.

Determinants of Interrater Reliability of Job Analysis: A Meta-analysis

2002 ◽  
Vol 18 (1) ◽  
pp. 52-62 ◽  
Author(s):  
Olga F. Voskuijl ◽  
Tjarda van Sliedregt
Keyword(s):  
Data Collection ◽  
Interrater Reliability ◽  
Meta Analysis ◽  
Job Analysis ◽  
Job Descriptions ◽  
Job Description ◽  
Research And Practice ◽  
Descriptive Information ◽  
Interrater Reliability Coefficients ◽  
Reliability Coefficients

Summary: This paper presents a meta-analysis of published job analysis interrater reliability data in order to predict the expected levels of interrater reliability within specific combinations of moderators, such as rater source, experience of the rater, and type of job descriptive information. The overall mean interrater reliability of 91 reliability coefficients reported in the literature was .59. The results of experienced professionals (job analysts) showed the highest reliability coefficients (.76). The method of data collection (job contact versus job description) only affected the results of experienced job analysts. For this group higher interrater reliability coefficients were obtained for analyses based on job contact (.87) than for those based on job descriptions (.71). For other rater categories (e.g., students, organization members) neither the method of data collection nor training had a significant effect on the interrater reliability. Analyses based on scales with defined levels resulted in significantly higher interrater reliability coefficients than analyses based on scales with undefined levels. Behavior and job worth dimensions were rated more reliable (.62 and .60, respectively) than attributes and tasks (.49 and .29, respectively). Furthermore, the results indicated that if nonprofessional raters are used (e.g., incumbents or students), at least two to four raters are required to obtain a reliability coefficient of .80. These findings have implications for research and practice.

Employees’ Critical Thinking, Leaders’ Inspirational Motivation, and Voice Behavior

2018 ◽  
Vol 17 (1) ◽  
pp. 33-41 ◽  
Author(s):  
Jing Jiang ◽  
Ang Gao ◽  
Baiyin Yang
Keyword(s):  
Critical Thinking ◽  
Field Study ◽  
Voice Behavior ◽  
Research And Practice ◽  
Inspirational Motivation ◽  
Positive Effect

Abstract. This study uses implicit voice theory to examine the influence of employees’ critical thinking and leaders’ inspirational motivation on employees’ voice behavior via voice efficacy. The results of a pretest of 302 employees using critical thinking questionnaires and a field study of 273 dyads of supervisors and their subordinates revealed that both employees’ critical thinking and leaders’ inspirational motivation had a positive effect on employees’ voice and that voice efficacy mediates the relationships among employees’ critical thinking, leaders’ inspirational motivation, and employees’ voice. Implications for research and practice are discussed.

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