Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States

Abstract Spinal muscular atrophy (SMA) is a rare neuromuscular disease with a rapidly evolving treatment landscape. To better meet the needs of trial sponsors and the patient community in the United States (US) in this evolving context, Cure SMA established a clinical trial readiness program for new and prospective SMA clinical trial sites. Program development was informed by a review of the SMA clinical trial landscape, successful NMD trial and care networks, and factors important to effective trial conduct in SMA. The program was piloted in 2018 with a virtual site readiness evaluation, a trial readiness toolkit, and a readiness program for physical therapists and clinical evaluators. Nine US research hospitals participated in the pilot. Cure SMA evaluated the pilot program and resources through feedback surveys, which supported the program’s relevance and value. Since 2018, the program has been expanded with additional sites, new best practices toolkits, and workshops. In partnership with Cure SMA, SMA Europe is also extending programming to European countries. The program is significant as an example of a patient advocacy group working successfully with pharmaceutical companies, other patient advocacy organizations, and research hospitals to promote trial readiness, and may serve as a model for organizations in other regions and diseases.

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Patient advocacy organizations’ information for patients on pre-approval access to investigational treatments

BMC Research Notes ◽

10.1186/s13104-019-4745-7 ◽

2019 ◽

Vol 12 (1) ◽

Cited By ~ 2

Author(s):

Kelly McBride Folkers ◽

Sarah Leone ◽

Arthur Caplan

Keyword(s):

United States ◽

Clinical Trial ◽

Clinical Trials ◽

Drug Administration ◽

Patient Advocacy ◽

The United States ◽

Patient Access ◽

Advocacy Organizations ◽

Lack Of Information ◽

The U.S

Abstract Objective To evaluate the availability of information regarding patient access to investigational treatments through clinical trials and non-trial pre-approval access pathways from a sample of patient advocacy organization (PAO) websites in the United States. Results We systematically analyzed the content of 118 randomly selected PAO websites to assess whether they contained information on clinical trials and non-trial pathways—e.g., the U.S. Food and Drug Administration (FDA) expanded access (EA) program and right to try—over the course of two months from February to March 2019. A majority (81%, n = 96) of PAOs provided a link to ClinicalTrials.gov, and 73% (n = 86) had their own clinical trial finder or list of relevant trials. 23% (n = 27) mentioned EA, with 8% (n = 9) providing specific resources for FDA’s EA program. 8% (n = 10) provided a statement on the passage of the federal right to try law. A majority of PAO websites contained information on clinical trials, but a minority discussed non-trial pre-approval access. The lack of information on the latter highlights an area in need of improvement.

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The Incorporation of American Religion: The Case of the Presbyterians

Religion and American Culture A Journal of Interpretation ◽

10.1525/rac.1991.1.1.03a00060 ◽

1991 ◽

Vol 1 (1) ◽

pp. 101-118

Author(s):

Louis Weeks

Keyword(s):

United States ◽

Voluntary Associations ◽

The United States ◽

Colonial Period ◽

American Religion ◽

Cultural Patterns ◽

Christian Church ◽

Non Profit ◽

Protestant Denominations ◽

Family Groups

The Christian church, including all its various branches, has been consistently susceptible to the forces that form or change cultures. Scholars claim that this adaptability has been extremely important in the rise and spread of the religion. In the American environment, Protestants formed voluntary associations that attracted people individually and by family groups. This environment actually shaped “denominations” even during the colonial period. One such denomination was the Presbyterians, who pioneered in the formation of a communion that existed as neither a “state church” nor a “dissenting” church body. As the United States experienced industrialization and growing complexity in economic and cultural patterns, the Protestant denominations were affected by those same forces. Thus, denominations naturally became what came to be termed “non-profit corporations,” subject to the limitations and problems of such organizations but also the beneficiaries of that system as well.

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How do Public Officials Learn About Policy? A Field Experiment on Policy Diffusion

British Journal of Political Science ◽

10.1017/s0007123420000770 ◽

2021 ◽

pp. 1-8

Author(s):

Miguel M. Pereira

Keyword(s):

United States ◽

Interest Group ◽

Policy Diffusion ◽

The United States ◽

Causal Link ◽

Policy Learning ◽

Learning Context ◽

Public Officials ◽

Non Profit

Abstract Prior research suggests that partisanship can influence how legislators learn from each other. However, same-party governments are also more likely to share similar issues, ideological preferences and constituency demands. Establishing a causal link between partisanship and policy learning is difficult. In collaboration with a non-profit organization, this study isolates the role of partisanship in a real policy learning context. As part of a campaign promoting a new policy among local representatives in the United States, the study randomized whether the initiative was endorsed by co-partisans, out-partisans or both parties. The results show that representatives are systematically more interested in the same policy when it is endorsed by co-partisans. Bipartisan initiatives also attract less interest than co-partisan policies, and no more interest than out-partisan policies, even in more competitive districts. Together, the results suggest that ideological considerations cannot fully explain partisan-based learning. The study contributes to scholarship on policy diffusion, legislative signaling and interest group access.

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The Performance of Non-profit Housing Developments in the United States

Housing Studies ◽

10.1080/02673030120080071 ◽

2001 ◽

Vol 16 (5) ◽

pp. 595-618 ◽

Cited By ~ 5

Author(s):

William M. Rohe ◽

Roberto G. Quercia ◽

Diane K. Levy

Keyword(s):

United States ◽

The United States ◽

Non Profit ◽

Housing Developments

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ANALISIS RELEVANSI PENERAPAN AKUNTANSI DANA PADA AKUNTANSI PEMERINTAH INDONESIA

JURNAL MANAJEMEN KEUANGAN PUBLIK ◽

10.31092/jmkp.v3i2.601 ◽

2019 ◽

Vol 3 (2) ◽

pp. 1-6

Author(s):

Hari Sugiyanto

Keyword(s):

United States ◽

Financial Statements ◽

The United States ◽

Accounting System ◽

Literature Study ◽

Non Profit ◽

Indonesian Government ◽

Government Accounting ◽

Fund Accounting ◽

Rule Out

The Indonesian government has applied the accrual basis in preparing its financial statements. However, it is possible to implement fund accounting. In the PP Conceptual Framework Number 71 Year 2010 it is stated that the Indonesian government can apply fund accounting for control purposes. Fund Accounting is an accounting system that is often used by non-profit organizations and public sector institutions, including government. The system is a method of recording and displaying entities in accounting such as assets and liabilities which are grouped according to their respective uses.This study aims to determine the relevance of the application of fund accounting in Indonesia and conduct a literature study on fund accounting practices in the United States government.Although the Indonesian government has applied accrual-based accounting, it does not rule out the possibility that fund accounting will be applied. Of course the authorized entity needs to draw up relevant regulations so that the accounting of funds is relevant to the implementation of accrual-based government accounting.

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Accountability Challenges in Networks and Partnerships: Evidence from Educational Partnerships in the United States

International Review of Administrative Sciences ◽

10.1177/0020852304044260 ◽

2004 ◽

Vol 70 (2) ◽

pp. 331-344 ◽

Cited By ~ 24

Author(s):

Muhittin Acar ◽

Peter J. Robertson

Keyword(s):

United States ◽

Public Schools ◽

Field Research ◽

The United States ◽

Public Private Partnerships ◽

Interorganizational Networks ◽

Access To Information ◽

Educational Partnerships ◽

Non Profit ◽

K 12

The study from which this article is drawn constitutes one of the first attempts to remedy the paucity of research on accountability in the context of interorganizational networks and public–private partnerships. The data for the study were drawn from field research focusing particularly on partnerships formed between K-12 public schools and private and/or non-profit organizations in the United States. The most frequently cited difficulties associated with accountability in partnerships were the availability of and access to information, sectoral and personal differences, and frequent changes in personnel, resources, and partners.

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Since Silent Spring: New Voices, New Analyses, and New Movements

NEW SOLUTIONS A Journal of Environmental and Occupational Health Policy ◽

10.2190/p3b2-vt3l-7jdf-424u ◽

2003 ◽

Vol 12 (4) ◽

pp. 319-334 ◽

Cited By ~ 1

Author(s):

H. Patricia Hynes

Keyword(s):

United States ◽

Civil Rights ◽

Community Development ◽

Environmental Policies ◽

The United States ◽

Agricultural Technologies ◽

Rachel Carson ◽

Non Profit ◽

Silent Spring ◽

Pollutant Discharge

Forty years ago, in the enormously praised and fiercely criticized book, Silent Spring, Rachel Carson demonstrated the dangers of pesticides to humans and ecosystems and called for precaution in their use. Yet, the majority of environmental regulations passed since 1962 have primarily addressed pollutant discharge rather than cleaner products and technologies. The number of active ingredients in pesticides used in the United States has risen from 32 in 1939 to 860 in recent times, while the overall volume of agrochemicals applied has nearly doubled since the publication of Silent Spring. The last 40 years have brought significant changes with respect to environmental policies, agricultural technologies, urbanization, civil rights, women's rights, the roles of non-profit organizations and community development, and increased poverty, hunger, and economic inequality. In recent years, new voices, new analyses, and new movements have emerged offering fresh perspectives on how we can answer Carson's clarion call to protect our planet and ourselves.

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Study of the role and activities of non-profit organization CDC declining population city in the United States

Journal of the City Planning Institute of Japan ◽

10.11361/journalcpij.49.777 ◽

2014 ◽

Vol 49 (3) ◽

pp. 777-782

Author(s):

Yoko Shimizu ◽

Toru Nakayama

Keyword(s):

United States ◽

The United States ◽

Non Profit

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National Science Foundation

Issue A Journal of Opinion ◽

10.1017/s0047160700504144 ◽

1978 ◽

Vol 8 (2-3) ◽

pp. 110-110

Keyword(s):

United States ◽

National Science Foundation ◽

The United States ◽

Educational Institutions ◽

International Programs ◽

Cooperative Research ◽

Non Profit ◽

Grant Support ◽

Food And Nutrition ◽

National Science

Within the National Science Foundation, the Division of International Programs administers the United States-Africa Cooperative Science Program. Three types of cooperative activities receive grant support under the program: cooperative research projects, scientific seminars or workshops, and scientific visits including travel to plan or confer about scientific activities. Priority is given to projects which focus on resources, food and nutrition, ecology, and engineering. Organizations which are eligible for grant funding include non-profit higher educational institutions, scientific institutes, scientific and technical institutes and similar organizations that are chartered to do business in the United States. A list of project grants for FY 1976 and FY 1977 was not obtained.

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