scholarly journals Interactions of pharmaceutical companies with world countries, cancers and rare diseases from Wikipedia network analysis

PLoS ONE ◽  
2019 ◽  
Vol 14 (12) ◽  
pp. e0225500
Author(s):  
Guillaume Rollin ◽  
José Lages ◽  
Tatiana S. Serebriyskaya ◽  
Dima L. Shepelyansky
Keyword(s):  
Network Analysis ◽  
Rare Diseases ◽  
Pharmaceutical Companies

scholarly journals Interactions of pharmaceutical companies with world countries, cancers and rare diseases from Wikipedia network analysis

2019 ◽  
Author(s):  
Guillaume Rollin ◽  
José Lages ◽  
Tatiana S. Serebriyskaya ◽  
Dima L. Shepelyansky
Keyword(s):  
Network Analysis ◽  
Rare Diseases ◽  
Renal Diseases ◽  
Pharmaceutical Companies ◽  
Friendship Networks ◽  
Market Capitalization ◽  
Google Matrix

AbstractUsing the English Wikipedia network of more than 5 million articles we analyze interactions and interlinks between the 34 largest pharmaceutical companies, 195 world countries, 47 rare renal diseases and 37 types of cancer. The recently developed algorithm using a reduced Google matrix (REGOMAX) allows us to take account both of direct Markov transitions between these articles and also of indirect transitions generated by the pathways between them via the global Wikipedia network. This approach therefore provides a compact description of interactions between these articles that allows us to determine the friendship networks between them, as well as the PageRank sensitivity of countries to pharmaceutical companies and rare renal diseases. We also show that the top pharmaceutical companies in terms of their Wikipedia PageRank are not those with the highest market capitalization.

scholarly journals Orphan drugs

2013 ◽  
Vol 66 (9-10) ◽  
pp. 373-378
Author(s):  
Svetlana Golocorbin-Kon ◽  
Aleksandra Vojinovic ◽  
Mladena Lalic-Popovic ◽  
Nebojsa Pavlovic ◽  
Momir Mikov
Keyword(s):  
Rare Diseases ◽  
United States Of America ◽  
Turning Point ◽  
Life Quality ◽  
Orphan Drugs ◽  
The United States ◽  
Pharmaceutical Companies ◽  
Time Loss ◽  
Number Of Patients ◽  
The Right

Introduction. Drugs used for treatment of rare diseases are known worldwide under the term of orphan drugs because pharmaceutical companies have not been interested in ?adopting? them, that is in investing in research, developing and producing these drugs. This kind of policy has been justified by the fact that these drugs are targeted for small markets, that only a small number of patients is available for clinical trials, and that large investments are required for the development of drugs meant to treat diseases whose pathogenesis has not yet been clarified in majority of cases. The aim of this paper is to present previous and present status of orphan drugs in Serbia and other countries. The beginning of orphan drugs development. This problem was first recognized by Congress of the United States of America in January 1983, and when the ?Orphan Drug Act? was passed, it was a turning point in the development of orphan drugs. This law provides pharmaceutical companies with a series of reliefs, both financial ones that allow them to regain funds invested into the research and development and regulatory ones. Seven years of marketing exclusivity, as a type of patent monopoly, is the most important relief that enables companies to make large profits. Conclusion. There are no sufficient funds and institutions to give financial support to the patients. It is therefore necessary to make health professionals much more aware of rare diseases in order to avoid time loss in making the right diagnosis and thus to gain more time to treat rare diseases. The importance of discovery, development and production of orphan drugs lies in the number of patients whose life quality can be improved significantly by administration of these drugs as well as in the number of potential survivals resulting from the treatment with these drugs.

scholarly journals Orphan drug policy

2020 ◽  
Author(s):  
Roshani goel
Keyword(s):  
Orphan Drug ◽  
Rare Diseases ◽  
Access To Health Care ◽  
Health Care Services ◽  
Developed Countries ◽  
Family Welfare ◽  
Pharmaceutical Companies ◽  
Care Services ◽  
Drug Policies ◽  
The Cost

Millions of people in developing countries do not have access to health care services and medications which are available in developed countries. Most of the rare diseases are genetic in nature. They disproportionately impact children: 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years (Ministry of Health and Family Welfare, 2017, p.9). One of the main problems is that doctors are not able to study the disease as it is genetic in nature. Despite having the medication, they do not know how to track and treat the disease. However, patients suffering from rare diseases have same rights of care like any other patient. The major concern related to it is of accessibility and awareness. This shows an obvious link between the disease and poverty which raises a serious question on the cost of a treatment which is unaffordable by the patient. Development of Orphan drug policies are least of pharmaceutical companies. They work on the calculation of number of vaccines manufactured on cost of per vaccination. Market is a precious venture for pharmaceutical companies. They are hesitant on the sale of the product. Research done for the development of are diseases and money invested in it will not be recovered by market sales. Thus, government has asked ministries to draft a policy balancing both the issue simultaneously.

scholarly journals European and Italian regulation on orphan medicinal products

2013 ◽  
Vol 14 (2) ◽  
pp. 89-98
Author(s):  
Roberta Joppi
Keyword(s):  
Orphan Drug ◽  
Rare Diseases ◽  
Potential Benefit ◽  
Orphan Drugs ◽  
Pharmaceutical Companies ◽  
Drug Status ◽  
Medicinal Products ◽  
Eu Legislation ◽  
Orphan Medicinal Products ◽  
The Eu

The paper presents an overview of the European and Italian Regulation on Orphan Medicinal Products (OMPs), along with some data on the OMPs licensed in the EU from 2000 to 2012. The EU legislation encourages pharmaceutical companies to develop drugs for rare diseases, so-called “orphan drugs”. The European Medicine Agency recognizes orphan drug status mainly on the basis of the prevalence of the disease (≤ 5/10,000), and potential benefit. Orphan status implies incentives for pharmaceutical companies. From 2000 up to 2012 890 candidate orphan drug designations received a positive opinion and the marketing authorization was granted to 72 OMPs corresponding to 80 different indications. Currently, 59 OMPs are available to Italian patients either because licensed to the market by the AIFA or included in the list of the L. 648/96. Despite of an encouraging regulation nearly all the currently estimated rare diseases still await treatments.

The HemoRec Database as an Example of a Rare Diseases Registry

2011 ◽  
Vol 07 (02) ◽  
pp. 147
Author(s):  
Joanna Zdziarska ◽  
Krzysztof Chojnowski ◽  
Anna Klukowska ◽  
Magdalena Łętowska ◽  
Andrzej Mital ◽  
...  
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Rare Diseases ◽  
Healthcare Providers ◽  
Orphan Drugs ◽  
Pharmaceutical Companies ◽  
Bleeding Disorders ◽  
International Registry ◽  
Data Collection And Analysis ◽  
Central Registry

Rare diseases constitute a major burden on public health, mainly due to the high cost of therapy and logistical difficulties (for example, the need to organise a network of designated treatment centres). National and international registries of rare diseases facilitate data collection and analysis for demographic, economic and research purposes. They are also useful for treatment centres and other healthcare providers and pharmaceutical companies developing orphan drugs. We present the HemoRec database, implemented in 2006 in six European countries, as an example of an international registry of inherited bleeding disorders. HemoRec is used in 15 Polish treatment centres and stores data on 1,100 patients with inherited bleeding disorders (amounting to 24.9% of all patients registered in the Polish central registry held at the Institute of Haematology and Blood Transfusion in Warsaw). It can be developed in the future into a national platform of data collection and exchange in the network of Polish, and hopefully also European, haemophilia treatment centres.

R&D Collaboration Strategies for Innovation: An Empirical Study Through Social Network Analysis

2017 ◽  
Vol 14 (01) ◽  
pp. 1740001 ◽  
Author(s):  
Antonello Cammarano ◽  
Mauro Caputo ◽  
Emilia Lamberti ◽  
Francesca Michelino
Keyword(s):  
Social Network ◽  
Social Network Analysis ◽  
Network Analysis ◽  
Pharmaceutical Companies ◽  
Business Network ◽  
Accounting Data ◽  
Effective Instrument ◽  
Innovation Strategies ◽  
The Impact ◽  
Collaboration Strategies

The paper investigates the impact of network strategies on innovation strategies carried out in 2011 by 44 top R&D spending bio-pharmaceutical companies. Gathering patent and accounting data, we built the business network of joint development activities making use of social network analysis (SNA). Our findings show that each network strategy is related to different innovation strategies, confirming that social network analysis is an effective instrument for explaining why firms enter into R&D agreements with partners and the linkage of such collaborations with the overall innovation strategy.

scholarly journals Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis

10.2196/17813 ◽  
2020 ◽  
Vol 8 (5) ◽  
pp. e17813 ◽  
Author(s):  
Qiqing Bi ◽  
Lining Shen ◽  
Richard Evans ◽  
Zhiguo Zhang ◽  
Shimin Wang ◽  
...  
Keyword(s):  
Health Care ◽  
Social Network ◽  
Social Network Analysis ◽  
Network Analysis ◽  
Rare Diseases ◽  
Social Life ◽  
Latent Dirichlet Allocation ◽  
Short Term Memory ◽  
Clustering Coefficient ◽  
Number Of Patients

Background There are more than 6000 rare diseases in existence today, with the number of patients with these conditions rapidly increasing. Most research to date has focused on the diagnosis, treatment, and development of orphan drugs, while few studies have examined the topics and emotions expressed by patients living with rare diseases on social media platforms, especially in online health communities (OHCs). Objective This study aimed to determine the topic categorizations and sentiment polarity for albinism in a Chinese OHC, Baidu Tieba, using multiple methods. The OHC was deeply mined using topic mining, social network analysis, and sentiment polarity analysis. Through these methods, we determined the current situation of community construction, identifying the ongoing needs and problems experienced by people with albinism in their daily lives. Methods We used the albinism community on the Baidu Tieba platform as the data source in this study. Term frequency–inverse document frequency, latent dirichlet allocation models, and naive Bayes were employed to mine the various topic categories. Social network analysis, which was completed using the Gephi tool, was employed to analyze the evolution of the albinism community. Sentiment polarity analysis was performed using a long short-term memory algorithm. Results We identified 8 main topics discussed in the community: daily sharing, family, interpersonal communication, social life and security, medical care, occupation and education, beauty, and self-care. Among these topics, daily sharing represented the largest proportion of the discussions. From 2012 to 2019, the average degree and clustering coefficient of the albinism community continued to decline, while the network center transferred from core communities to core users. A total of 68.43% of the corpus was emotional, with 35.88% being positive and 32.55% negative. There were statistically significant differences in the distribution of sentiment polarity between topics (P<.001). Negative emotions were twice as high as positive emotions in the social life and security topic. Conclusions The study reveals insights into the emotions expressed by people with albinism in the Chinese OHC, Baidu Tieba, providing health care practitioners with greater appreciation of the current emotional support needed by patients and the patient experience. Current OHCs do not exert enough influence due to limited effective organization and development. Health care sectors should take greater advantage of OHCs to support vulnerable patients with rare diseases to meet their evidence-based needs.

scholarly journals Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis (Preprint)

2020 ◽  
Author(s):  
Qiqing Bi ◽  
Lining Shen ◽  
Richard Evans ◽  
Zhiguo Zhang ◽  
Shimin Wang ◽  
...  
Keyword(s):  
Health Care ◽  
Social Network ◽  
Social Network Analysis ◽  
Network Analysis ◽  
Rare Diseases ◽  
Social Life ◽  
Latent Dirichlet Allocation ◽  
Short Term Memory ◽  
Clustering Coefficient ◽  
Number Of Patients

BACKGROUND There are more than 6000 rare diseases in existence today, with the number of patients with these conditions rapidly increasing. Most research to date has focused on the diagnosis, treatment, and development of orphan drugs, while few studies have examined the topics and emotions expressed by patients living with rare diseases on social media platforms, especially in online health communities (OHCs). OBJECTIVE This study aimed to determine the topic categorizations and sentiment polarity for albinism in a Chinese OHC, Baidu Tieba, using multiple methods. The OHC was deeply mined using topic mining, social network analysis, and sentiment polarity analysis. Through these methods, we determined the current situation of community construction, identifying the ongoing needs and problems experienced by people with albinism in their daily lives. METHODS We used the albinism community on the Baidu Tieba platform as the data source in this study. Term frequency–inverse document frequency, latent dirichlet allocation models, and naive Bayes were employed to mine the various topic categories. Social network analysis, which was completed using the Gephi tool, was employed to analyze the evolution of the albinism community. Sentiment polarity analysis was performed using a long short-term memory algorithm. RESULTS We identified 8 main topics discussed in the community: daily sharing, family, interpersonal communication, social life and security, medical care, occupation and education, beauty, and self-care. Among these topics, daily sharing represented the largest proportion of the discussions. From 2012 to 2019, the average degree and clustering coefficient of the albinism community continued to decline, while the network center transferred from core communities to core users. A total of 68.43% of the corpus was emotional, with 35.88% being positive and 32.55% negative. There were statistically significant differences in the distribution of sentiment polarity between topics (<i>P</i><.001). Negative emotions were twice as high as positive emotions in the social life and security topic. CONCLUSIONS The study reveals insights into the emotions expressed by people with albinism in the Chinese OHC, Baidu Tieba, providing health care practitioners with greater appreciation of the current emotional support needed by patients and the patient experience. Current OHCs do not exert enough influence due to limited effective organization and development. Health care sectors should take greater advantage of OHCs to support vulnerable patients with rare diseases to meet their evidence-based needs.

scholarly journals Collecting rare diseases

F1000Research ◽  
2014 ◽  
Vol 3 ◽  
pp. 260
Author(s):  
Sean Ekins
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Common Knowledge ◽  
Scientific Understanding ◽  
Pharmaceutical Companies ◽  
Academic Scientists ◽  
Patient Advocate ◽  
The Many ◽  
Venture Funding ◽  
New Treatments

This editorial introduces the F1000Research rare disease collection. It is common knowledge that for new treatments to be successful there has to be a partnership between the many interested parties such as the patient, advocate, disease foundations, the academic scientists, venture funding organizations, biotech companies, pharmaceutical companies, NIH, and the FDA. Our intention is to provide a forum for discussion and dissemination of any rare disease related topics that will advance scientific understanding and progress to treatments.

Challenges in Evaluating Safety and Efficacy in Drug Development for Rare Diseases: A Review for Pharmacists

2020 ◽  
pp. 089719002093097
Author(s):  
Kanya K. Shah ◽  
Stephen Kogut ◽  
Angela Slitt
Keyword(s):  
Clinical Trials ◽  
Drug Development ◽  
Rare Disease ◽  
Rare Diseases ◽  
The United States ◽  
Priority Review ◽  
Pharmaceutical Companies ◽  
Federal Programs ◽  
Financial Barriers ◽  
Safety And Efficacy

A rare disease, or orphan disease, in the United States is a condition with a national prevalence of fewer than 200,000 diagnoses. As therapies for rare diseases are developed and brought to market, pharmacists should understand the challenges of drug development for rare diseases and aid in educating patients about the approval process for rare disease therapies. Developing drugs for treating rare diseases presents unique challenges in proving the drug’s safety and efficacy with adequate study design, power, and validity. Results of the clinical trials for rare diseases may be weakened by small patient populations, limited disease information, and difficulty defining end points and biomarkers. In addition to investigational barriers, pharmaceutical companies face financial barriers in justifying the investment of bringing a rare disease therapy to market. Federal programs, such as the Orphan Drug Act of 1983, expedited review, the Rare Pediatric Disease Priority Review Vouchers (RPD PRV) program, and the 21st Century Cures Act, give pharmaceutical companies motivation to develop therapies for rare diseases. The objective of this article is to provide pharmacists with an understanding of the challenges in designing clinical trials for drugs for rare diseases and discuss federal programs that address efforts to develop safe and efficacious drugs for rare diseases.

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