Searching for Clinical Trials using clinicaltrials.gov and specialized search
engines
Rob Camp goes through various online tools and search engines which enable
patients to search for clinical trials. Rob’s background includes serving as
Executive Director of the EATG (European AIDS Treatment Group), the creation
of an HIV organisation in Barcelona, the creation of national groups in Spain
and other countries (organising seminars on how to create organisations in EU
Eastern States, Southern States), leading projects supported by the European
Commission department for Public Health (DG SANCO), working on funding for
NGOs. Rob is currently working half time in the US as liaison between patient
organisations and the FDA, and spends the rest of his time in Europe. Rob
speaks English and Spanish
Invitational talk from the NSF/NCI workshop "Cyberinfrastructure in Behavioral Medicine" in San Diego on March 31st 2008, talking about what I call infodemiology / infoveillance work
Riff: A Social Network and Collaborative Platform for Public Health Disease S...Taha Kass-Hout, MD, MS
A hybrid (event-based and indicator-based) platform designed to streamline the collaboration between domain experts and machine learning algorithms for detection, prediction and response to health-related events (such as disease outbreaks or pandemics). The platform helps synthesize health-related event indicators from a wide variety of information sources (structured and unstructured) into a consolidated picture for analysis, maintenance of “community-wide coherence”, and collaboration processes. The platform offers features to detect anomalies, visualize clusters of potential events, predict the rate and spread of a disease outbreak and provide decision makers with tools, methodologies and processes to investigate the event.
Open Access and Property Rights on a Collision Course with ScholarsKimberly Yang
This seminar talk focused on open access as a philosophy directly affecting scholars, academics, and consumers and its tension with property rights (intellectual property, copyright, proprietary databases). These impact our ability (or inability) to search, identify, retrieve, access, and use full-text publications or data relevant to research topics and investigations. It impacts our ability to use others' works (and our own work) in our research, writing, publishing and teaching.
Invitational talk from the NSF/NCI workshop "Cyberinfrastructure in Behavioral Medicine" in San Diego on March 31st 2008, talking about what I call infodemiology / infoveillance work
Riff: A Social Network and Collaborative Platform for Public Health Disease S...Taha Kass-Hout, MD, MS
A hybrid (event-based and indicator-based) platform designed to streamline the collaboration between domain experts and machine learning algorithms for detection, prediction and response to health-related events (such as disease outbreaks or pandemics). The platform helps synthesize health-related event indicators from a wide variety of information sources (structured and unstructured) into a consolidated picture for analysis, maintenance of “community-wide coherence”, and collaboration processes. The platform offers features to detect anomalies, visualize clusters of potential events, predict the rate and spread of a disease outbreak and provide decision makers with tools, methodologies and processes to investigate the event.
Open Access and Property Rights on a Collision Course with ScholarsKimberly Yang
This seminar talk focused on open access as a philosophy directly affecting scholars, academics, and consumers and its tension with property rights (intellectual property, copyright, proprietary databases). These impact our ability (or inability) to search, identify, retrieve, access, and use full-text publications or data relevant to research topics and investigations. It impacts our ability to use others' works (and our own work) in our research, writing, publishing and teaching.
Luciano informs healthcare_2015 Nashville, TN USA July 30 2015Joanne Luciano
This talk presents and explains Health Web Science, Health Web Observatories, and the technologies needed to create and utilize them as an approach towards preferable health outcomes in the 21st century. Health Web Science (HWS), which impact of the Web on health and wellbeing, aims towards a preventative, participatory, personalized, and predictive (P4) model of healthcare. HWS posits this can be achieved by the leveraging of the Web’s data, resources and nature. In studying the Web, it is impossible to ignore the evolving social, political, economic, policy questions that emerge as a result of the use of the Web. Health Web Observatories play a role by enabling the study of these data, make available the metadata, and thereby enable it as a feedback mechanism for preferable futures.
Accuscript Pharmacovigilance Service - Literature Monitoring & Social Media D...Ajay Francis Christopher
- Global (via Embase & PubMed), Local journal & Social Media Literature Search
- Social Media Data mining (sentiment analysis of drugs)
- Review of literature search hits relevant for AE reporting/safety information
- Developing ready-to-use ICSR narratives
- QC of ICSRs.
This is the trial lecture of my PhD, which will be defended the 24th of October 2014 in the Arctic Univ of Norway (UiT).
In this lecture I will provide an overview of the benefits and challenges of using social media in crisis management. As study case we use the ongoing ebola crisis.
NCI Cancer Imaging Program - Cancer Research Data EcosystemWarren Kibbe
Given to the NCI Cancer Imaging Program monthly telecon on January 9th, 2017. NCI Genomic Data Commons, Beau Biden Cancer Moonshot Blue Ribbon Panel, Cancer Research Data Ecosystem and the role of imaging in precision medicine
A 45minute talk on the basics of Web 2, IT and medicine, particularly focussing on Web 2 tools that can be used by doctors and patients. Also a brief look at accessing these and other tools via portable means, demonstrated with my iPhone.
Utilize Digital and Social Media Data to Inform Your Research in Novel WaysKatja Reuter, PhD
In collaboration with Audun Utengen and Thomas Lee from Symplur LLC, we explore the usage of digital and social media data to inform research in novel ways and discover emerging health trends, disease communities and outreach mechanisms.
This presentation is part of the Digital Scholar Training Series at USC and CHLA.
Learn more about the initiative: http://sc-ctsi.org/digital-scholar/
News story: http://sc-ctsi.org/index.php/news/new-digital-scholar-training-initiative-helps-researchers-better-utilize-we#.VDhIWWK9mKU
Eysenbach AMIA Keynote: From Patient Needs to Personal Health ApplicationsGunther Eysenbach
AMIA Spring Conference, May 29th-31st, 2008, Phoenix/AZ. PHR Track Keynote covers: An international perspective on the importance of PHR/PHA development & research; patient needs (and other drivers of Personal Health Records); Emerging technological trends, with an emphasis on what Eysenbach calls PHR 2.0 – impact of Web 2.0 approaches e.g. to reduce attrition in ehealth applications
Eysenbach: Personal Health Applications and Personal Health RecordsGunther Eysenbach
Keynote talk at the AMIA Spring Conference in the PHR track (Personal Health Records), focussing on international develoments and a new paradigm which I call PHR 2.0
Luciano informs healthcare_2015 Nashville, TN USA July 30 2015Joanne Luciano
This talk presents and explains Health Web Science, Health Web Observatories, and the technologies needed to create and utilize them as an approach towards preferable health outcomes in the 21st century. Health Web Science (HWS), which impact of the Web on health and wellbeing, aims towards a preventative, participatory, personalized, and predictive (P4) model of healthcare. HWS posits this can be achieved by the leveraging of the Web’s data, resources and nature. In studying the Web, it is impossible to ignore the evolving social, political, economic, policy questions that emerge as a result of the use of the Web. Health Web Observatories play a role by enabling the study of these data, make available the metadata, and thereby enable it as a feedback mechanism for preferable futures.
Accuscript Pharmacovigilance Service - Literature Monitoring & Social Media D...Ajay Francis Christopher
- Global (via Embase & PubMed), Local journal & Social Media Literature Search
- Social Media Data mining (sentiment analysis of drugs)
- Review of literature search hits relevant for AE reporting/safety information
- Developing ready-to-use ICSR narratives
- QC of ICSRs.
This is the trial lecture of my PhD, which will be defended the 24th of October 2014 in the Arctic Univ of Norway (UiT).
In this lecture I will provide an overview of the benefits and challenges of using social media in crisis management. As study case we use the ongoing ebola crisis.
NCI Cancer Imaging Program - Cancer Research Data EcosystemWarren Kibbe
Given to the NCI Cancer Imaging Program monthly telecon on January 9th, 2017. NCI Genomic Data Commons, Beau Biden Cancer Moonshot Blue Ribbon Panel, Cancer Research Data Ecosystem and the role of imaging in precision medicine
A 45minute talk on the basics of Web 2, IT and medicine, particularly focussing on Web 2 tools that can be used by doctors and patients. Also a brief look at accessing these and other tools via portable means, demonstrated with my iPhone.
Utilize Digital and Social Media Data to Inform Your Research in Novel WaysKatja Reuter, PhD
In collaboration with Audun Utengen and Thomas Lee from Symplur LLC, we explore the usage of digital and social media data to inform research in novel ways and discover emerging health trends, disease communities and outreach mechanisms.
This presentation is part of the Digital Scholar Training Series at USC and CHLA.
Learn more about the initiative: http://sc-ctsi.org/digital-scholar/
News story: http://sc-ctsi.org/index.php/news/new-digital-scholar-training-initiative-helps-researchers-better-utilize-we#.VDhIWWK9mKU
Eysenbach AMIA Keynote: From Patient Needs to Personal Health ApplicationsGunther Eysenbach
AMIA Spring Conference, May 29th-31st, 2008, Phoenix/AZ. PHR Track Keynote covers: An international perspective on the importance of PHR/PHA development & research; patient needs (and other drivers of Personal Health Records); Emerging technological trends, with an emphasis on what Eysenbach calls PHR 2.0 – impact of Web 2.0 approaches e.g. to reduce attrition in ehealth applications
Eysenbach: Personal Health Applications and Personal Health RecordsGunther Eysenbach
Keynote talk at the AMIA Spring Conference in the PHR track (Personal Health Records), focussing on international develoments and a new paradigm which I call PHR 2.0
A discussion of how social media is used to harm scientists' reputations. A discussion of current issues in genetic engineering. Presented as part of a night with Skeptic Society of St. Louis, 6/10/2016
Presentation 'Use of social networks for innovation in health' done by Vicente Traver (SABIEN-ITACA previously TSB-ITACA) during the IBEC 2014 conference held in Gwangju from 20 to 22th November, 2014. Presentation is focused about how social media can be used as driver for innovation in health
I hope you have found this issue to be informative and helpful in your work. Please send me any information you'd like posted in upcoming issues.
Any recommendations to improve this communique would be most appreciated!
And if you’d like to support the Center’s work with a tax deductible donation, that would be fantastic and do a great deal: http://centerforglobalinitiatives.org/donateNow.cfm
Cheers, and thank you for your work,
Chris
Predictive and Preventive Care: Metabolic Diseasesasclepiuspdfs
South Asians have a very high incidence of ischemic heart disease and stroke. In addition, they also have a very high incidence of metabolic diseases such as prehypertension, hypertension, visceral obesity, metabolic syndrome, prediabetes, type-2 diabetes, and its clinical complications. Currently, there are over 75 million diabetic subjects in India and an equal number of prediabetics. Republic of China has taken over India as the diabetes capital of the world, with over 115 million diabetics. Modern medicine is disease focused and has failed to address the prevention of these chronic diseases. According to the reports from the United Nations (Millennium Development Goals [MDGs], the World Health Organization, Global Health Initiatives, and the non-communicable disease risk task force), obesity has increased by 2-fold and type-2 diabetes by 4-fold worldwide. Experts in this field predict that chances of meeting the MDGs set by the UN members of reducing the incidence of these diseases at 2025 to the level of 2020 are very little. Western medicine has failed to reduce or reverse the trend in the incidence of these diseases. We feel that an integrated approach to health care may be a better option, to reduce the disease burden in developing and resource-poor countries. Having said that, one cannot prevent something that one is not aware of, as such it is the need of the hour for us, to develop a robust predictive and preventive health-care platform. In an earlier article, we presented our views on reducing or reversing cardiometabolic diseases. There is great enthusiasm among the health-care providers and professional bodies that integration of emerging technologies will help develop personalized, precision medicine, as well as reduce the cost of health-care worldwide.
How can doctors more efficiently use the internet and social media to improve patient care and keep current? The videos can be access at www.aboutcancer.com
During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the project.
RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post: http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
Many patient groups ask us how to start an awareness day for their individual disease. This presentations discusses best practices in starting an awareness day for your community. Highlights of what works to bring together your community for a disease awareness day.
Watch the entire webinar that this presentation was part of here: http://blog.rareconnect.org/best-practices/rareconnect-webinar-how-to-start-an-awareness-day-for-your-rare-disease/
Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with the disease in order to understand the experiences of people living with this rare disease. The poll was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The charts below is the summary data from those participants responses. For more visit: https://www.rareconnect.org/en/community/traps-syndrome/article/living-with-traps-poll
This presentation was given on July 28th during the Pitt Hopkins UK support group meeting in Manchester, UK.
Join the Pitt Hopkins syndrome community here:
https://www.rareconnect.org/en/community/pitt-hopkins-syndrome/understand
After being launched for 1 year, the RareConnect team updates the EuMGa, the European Myasthenia Gravis Federation on progress made in the MG community.
Highlights from Rare Disease Day 2011 which took place on Feb 28. An international awareness day coordinated at the international level by EURORDIS (Rare Diseases Europe)
Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
New Directions in Targeted Therapeutic Approaches for Older Adults With Mantl...i3 Health
i3 Health is pleased to make the speaker slides from this activity available for use as a non-accredited self-study or teaching resource.
This slide deck presented by Dr. Kami Maddocks, Professor-Clinical in the Division of Hematology and
Associate Division Director for Ambulatory Operations
The Ohio State University Comprehensive Cancer Center, will provide insight into new directions in targeted therapeutic approaches for older adults with mantle cell lymphoma.
STATEMENT OF NEED
Mantle cell lymphoma (MCL) is a rare, aggressive B-cell non-Hodgkin lymphoma (NHL) accounting for 5% to 7% of all lymphomas. Its prognosis ranges from indolent disease that does not require treatment for years to very aggressive disease, which is associated with poor survival (Silkenstedt et al, 2021). Typically, MCL is diagnosed at advanced stage and in older patients who cannot tolerate intensive therapy (NCCN, 2022). Although recent advances have slightly increased remission rates, recurrence and relapse remain very common, leading to a median overall survival between 3 and 6 years (LLS, 2021). Though there are several effective options, progress is still needed towards establishing an accepted frontline approach for MCL (Castellino et al, 2022). Treatment selection and management of MCL are complicated by the heterogeneity of prognosis, advanced age and comorbidities of patients, and lack of an established standard approach for treatment, making it vital that clinicians be familiar with the latest research and advances in this area. In this activity chaired by Michael Wang, MD, Professor in the Department of Lymphoma & Myeloma at MD Anderson Cancer Center, expert faculty will discuss prognostic factors informing treatment, the promising results of recent trials in new therapeutic approaches, and the implications of treatment resistance in therapeutic selection for MCL.
Target Audience
Hematology/oncology fellows, attending faculty, and other health care professionals involved in the treatment of patients with mantle cell lymphoma (MCL).
Learning Objectives
1.) Identify clinical and biological prognostic factors that can guide treatment decision making for older adults with MCL
2.) Evaluate emerging data on targeted therapeutic approaches for treatment-naive and relapsed/refractory MCL and their applicability to older adults
3.) Assess mechanisms of resistance to targeted therapies for MCL and their implications for treatment selection
Pulmonary Thromboembolism - etilogy, types, medical- Surgical and nursing man...VarunMahajani
Disruption of blood supply to lung alveoli due to blockage of one or more pulmonary blood vessels is called as Pulmonary thromboembolism. In this presentation we will discuss its causes, types and its management in depth.
Explore natural remedies for syphilis treatment in Singapore. Discover alternative therapies, herbal remedies, and lifestyle changes that may complement conventional treatments. Learn about holistic approaches to managing syphilis symptoms and supporting overall health.
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
- Video recording of this lecture in English language: https://youtu.be/lK81BzxMqdo
- Video recording of this lecture in Arabic language: https://youtu.be/Ve4P0COk9OI
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
- Link to NephroTube social media accounts: https://nephrotube.blogspot.com/p/join-nephrotube-on-social-media.html
The prostate is an exocrine gland of the male mammalian reproductive system
It is a walnut-sized gland that forms part of the male reproductive system and is located in front of the rectum and just below the urinary bladder
Function is to store and secrete a clear, slightly alkaline fluid that constitutes 10-30% of the volume of the seminal fluid that along with the spermatozoa, constitutes semen
A healthy human prostate measures (4cm-vertical, by 3cm-horizontal, 2cm ant-post ).
It surrounds the urethra just below the urinary bladder. It has anterior, median, posterior and two lateral lobes
It’s work is regulated by androgens which are responsible for male sex characteristics
Generalised disease of the prostate due to hormonal derangement which leads to non malignant enlargement of the gland (increase in the number of epithelial cells and stromal tissue)to cause compression of the urethra leading to symptoms (LUTS
MANAGEMENT OF ATRIOVENTRICULAR CONDUCTION BLOCK.pdfJim Jacob Roy
Cardiac conduction defects can occur due to various causes.
Atrioventricular conduction blocks ( AV blocks ) are classified into 3 types.
This document describes the acute management of AV block.
Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
Title: Sense of Smell
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the primary categories of smells and the concept of odor blindness.
Explain the structure and location of the olfactory membrane and mucosa, including the types and roles of cells involved in olfaction.
Describe the pathway and mechanisms of olfactory signal transmission from the olfactory receptors to the brain.
Illustrate the biochemical cascade triggered by odorant binding to olfactory receptors, including the role of G-proteins and second messengers in generating an action potential.
Identify different types of olfactory disorders such as anosmia, hyposmia, hyperosmia, and dysosmia, including their potential causes.
Key Topics:
Olfactory Genes:
3% of the human genome accounts for olfactory genes.
400 genes for odorant receptors.
Olfactory Membrane:
Located in the superior part of the nasal cavity.
Medially: Folds downward along the superior septum.
Laterally: Folds over the superior turbinate and upper surface of the middle turbinate.
Total surface area: 5-10 square centimeters.
Olfactory Mucosa:
Olfactory Cells: Bipolar nerve cells derived from the CNS (100 million), with 4-25 olfactory cilia per cell.
Sustentacular Cells: Produce mucus and maintain ionic and molecular environment.
Basal Cells: Replace worn-out olfactory cells with an average lifespan of 1-2 months.
Bowman’s Gland: Secretes mucus.
Stimulation of Olfactory Cells:
Odorant dissolves in mucus and attaches to receptors on olfactory cilia.
Involves a cascade effect through G-proteins and second messengers, leading to depolarization and action potential generation in the olfactory nerve.
Quality of a Good Odorant:
Small (3-20 Carbon atoms), volatile, water-soluble, and lipid-soluble.
Facilitated by odorant-binding proteins in mucus.
Membrane Potential and Action Potential:
Resting membrane potential: -55mV.
Action potential frequency in the olfactory nerve increases with odorant strength.
Adaptation Towards the Sense of Smell:
Rapid adaptation within the first second, with further slow adaptation.
Psychological adaptation greater than receptor adaptation, involving feedback inhibition from the central nervous system.
Primary Sensations of Smell:
Camphoraceous, Musky, Floral, Pepperminty, Ethereal, Pungent, Putrid.
Odor Detection Threshold:
Examples: Hydrogen sulfide (0.0005 ppm), Methyl-mercaptan (0.002 ppm).
Some toxic substances are odorless at lethal concentrations.
Characteristics of Smell:
Odor blindness for single substances due to lack of appropriate receptor protein.
Behavioral and emotional influences of smell.
Transmission of Olfactory Signals:
From olfactory cells to glomeruli in the olfactory bulb, involving lateral inhibition.
Primitive, less old, and new olfactory systems with different path
Surat @ℂall @Girls ꧁❤8527049040❤꧂@ℂall @Girls Service Vip Top Model Safe
Using the internet to search for clinical trial information
1. Creating RSS feeds of clinical trials to follow via RSS
reader; newsletter / blog services that could be of
interest to anyone thinking about participating/looking or
even want to be part of a design protocol negotiation.
2. MMRW Weekly; April 23, 2010 /
59(15);461
*
Estimates are based on survey data collected during January--September 2009 in response to the
question, "Did you look up health information on the Internet in the past 12 months?" (Approximately
1% of those sampled did not respond to the question.)
† 95% confidence interval.
3. Looking for a trial?
www.Clinicaltrials.gov – 88,236 trials (349
for everolimus) (rss – 17 trials open, 2 in
Poland)
www.Trialreach.com – 84,879 trials (244
for everolimus); send questions about the
study (twitter, facebook) – patient-oriented
– “Discover, understand, and access
clinical trials” (“online pt recruitment”)
www.Clinicalresearch.com – X trials (1 for
everolimus); monthly alerts
www.Pubmed.gov – everolimus - 989
entries, 333 about trials
4. www.Hon.ch
Tuberous sclerosis
Found 623 sites and pages automatically
retrieved by MARVIN (their robot)
4 sites subscribing to HON code
4 sites visited and described by HON
○ Tuberous-sclerosis.org (uk)
○ Health on the Net Foundation, NGO, “Medical information you
can trust!”
5. Nccam (NIH)
Biologically-based (herbals, vitamins, organic
approaches)
Energy medicine (sound, electromagnetics, light)
Manipulative body-based (chiro-, osteopathic, therapeutic
massage)
Mind-body (meditation, yoga, biofeedback, spirituality)
Whole medical systems (naturopathy, homeopathy, TCM,
Eastern medicines, ayurvedic medicine)
http://nccam.nih.gov (there is a newsletter)
http://nccam.nih.gov/research/clinicaltrials
Share this page: email, bookmark, facebook, myspace,
stumbleupon, digg, delicious (social bookmarking), google
6. Medline plus
http://www.nlm.nih.gov/medlineplus/
Interactive tutorials (pub’d by Patient Education Institute),
www.clinicaltrials.gov
Mobile version, what’s new, director’s comments, NIH
medlineplus magazine, search cloud, follow us on twitter
E-mail updates and rss feeds (subscribe using live
bookmarks or adding to your home page)
Cancer clinical trials:
www.cancer.gov/clinicaltrials/finding/treatment-trial-guide
Before you start
Searching for a trial
After finding a trial
Diagnosis checklist
All accessed 27.04.10
7. RSS
Really Simple Syndication news feeds
makes it possible for you to put together your own
customized lists of news and information. Thousands
of web sites have started adding special code that
allows RSS news readers to pick up the content. All
you have to do is sign up with a news reader and
choose the sites from which you want to get news.
For FDA & NIH I have an RSS that feeds me what I
want to receive.
25% of journalists receive 5 or more RSS feeds
8. I have NIH RSS feeds for news on
Antimicrobial (drug resistance), Asthma,
Careers at NAIAD, Centers for AIDS
Research, Clinical Trials recruiting,
flu/influenza, food allergy, global health,
HIV clinical trials, HIV/AIDS, Malaria,
NIAID and ERA, News releases,
Newsletter, NIAID funding, STI’s, Policy
changes, Training Career and Fellowship
awards, Transplantation, TB, Vaccine
research studies, viral hepatitis, hepatitis
trials, volunteering for clinical trials
9. As a result…
I was invited to learn more about a
Crohn’s disease trial at NIH on 15 April
They give you a quick inclusion/exclusion
Link to more info
12. FDA TRACK
Dashboards – measurements
It’s more than transparency, it’s accountability
There are a few dozen dashboards that convey a lot of
information on the progress of the agency over time.
The agency is open to suggestion at any rate, on the
possibility of adding new measurements. (WIP)
Program areas: Advertisements &Orphan Drugs among
hundreds of others
RSS feeds!
http://www.fda.gov/AboutFDA/WhatWeDo/track/default.htm
13. Subscriptions
The U.S. Global Health Initiative: Issues and
Perspectives
Toolbox
Email This Page and updates
RSS Feeds, twitter
varaddthis_pub='kaiserfamily';varaddthis_options =
'facebook, twitter, digg, google, favorites, delicious,
myspace, reddit, live, more';Share
Subscribe
4/14/2010
Kaiser Family Foundation, US-centric, www.kff.org, last accessed 09.05.10
14. Newsletters
UN Wire – a free service dedicated to
supporting UN efforts to address the most
pressing humanitarian, socioeconomic and
environmental challenges facing the world
today. Apr 26, 2010 - Gates recalibrates
polio campaign, with focus on health care
systems, - South Africa takes aim at
HIV/AIDS
http://www.smartbrief.com/un_wire/index.jsp
15. enacct
Enhance Access To Clinical Trials In Your Community
Founded in 2004 with support from the Lance Armstrong
Foundation. The only national organization devoted solely to
identifying, implementing and evaluating innovative community-
centered approaches to cancer clinical trials education.
They offer Recent news, Enacct programs, Training and
Resources & (2) email updates
Applying Community-Based Participatory Research
Principles and Approaches in Clinical Trials: Forging a New
Model for Cancer Clinical Research, has recently been
published in Progress in Community Health
Partnerships (PCHP), also in a “Beyond the Manuscript”
podcast interview, which you can listen to at
http://www.press.jhu.edu/journals/progress_in_community_healt
h_partnerships/multimedia.html
16. www.CDC.gov
“Credible Health Information”
TOPICS: Diseases and conditions, healthy living,
emergency preparedness & response, injury, violence and
safety, environmental health, travelers’ health, life stages
and populations, workplace safety & health
Multimedia & tools: widgets, rss feeds, cdc-tv, podcasts,
webinars
Global Health e-brief
http://www.cdc.gov/washington/globalhealth_ebrief.html
81 hits for tuberous sclerosis, via genomics, autism, cancer…
Accessed 09.05.10
17. (private?) blogs
www.eyeonfda.com
http://www.youtube.com/watch?v=RBvfNYFeRoE
http://www.youtube.com/user/eyeonfda#p/c/16F523
DCDE1C6625/16/dspangqMAVs
Other blogs – drugwonks.com, pharmalot,
pharmagossip, in the pipeline,
clinicaltrialstoday, …
Euro Sites and Blogs - Euro Pharma Today,
eHealthNews.EU Portal - The First European
eHealth News Portal., NICE, MHRA, EMEA,
WHO, HIMSS
18. facebook
Novartis - 4177 fans officially (1 left
while I was there)
305 fans on the Novartis page run by
animal rights people
RafaNadal has 2,375,406 fans
After winning Monte Carlo
(18.04.10, 22.46hrs), he said
“I am very very happy / Muy, muycontento!”
to which he got 4240 comments.
19. Connotea.org
Personal library
Free online reference management for
all researchers, clinicians and scientists
Completely free, no download
There are relatively simple step by steps to
explore, begin, account details, help, and
advanced
Tuberous sclerosis - there are 28 articles saved by others
here, along with 20 different tags (bookmark categories), 7
savers, 4 related tags
20. www.ifpma.org
http://clinicaltrials.ifpma.org/en/myportal/ind
ex.htm
60 “ongoing” trials on tuberous sclerosis,
sp’d by NIH, hospitals, pharma
No results of any trials listed (they have a
separate results section)
International Federation of Pharmaceutical
Manufacturers & Associations, accessed
20.04.10.
21. “a rich source of instant information. Stay
updated. Keep others updated. It’s a whole
thing.” Customize, etc
10s of millions of users broadcasting 55 million
Tweets / day.
Will donate its archive of public messages to the
Library of Congress.
Nature Reviews Drug Discovery is now on Twitter -
http://twitter.com/NatRevDrugDisc
Adaptive trials receive boost http://bit.ly/d5rkGN a
look @ the application of adaptive trial designs to
drug development
Journalists researching stories
22. The White House Twitters
The White House #Malaria kills
~1,000,000/yr. Here's our 6yr strategy
to fight back &
#endmalariahttp://bit.ly/awMQbO
#worldmalariaday
23. Google lists
http://www.youtube.com/watch?v=WedMuGn
WLQI
They provide maps, video previews, reviews
on your list; and add urls or typing words; they
suggest links
These can be shared, publically or specifically
Thru googlelists, they suggested
centerwatch.com, who then suggested many
other sites (13 systemic lupus trials listed)
Accessed on 27.04.10
24. www.searchcloud.net
1) Bethesda Maryland Tuberous Sclerosis Clinical Trials Listings ...
Most times the subjects receive treatment for without cost, and every ... Occasionally there is a cost for a Bethesda Tuberous Sclerosis clinical trial.
…clinicaltrialssearch.orgbethesda_maryland_tuberous_sclerosis_clinical_trial… Relevancy: 100%
2) Managing Epilepsy in Tuberous Sclerosis Complex: Treatment of ...
Treatment of Epilepsy in Tuberous Sclerosis Complex: Epilepsy in TSC occurs in 80-90% of affected individuals during their lifetime. Learn more about
management ...
www.medscape.com/viewarticle/495644_4 Relevancy: 87%
3) Tuberous Sclerosis Treatment : Treatment Search Results on ...
Find Tuberous Sclerosis treatment options on Healthline Treatment Search, including 12 Tests, 3 Medical Procedures, 2 Surgical Procedures. ...
www.healthline.com/treatments/tuberous-sclerosis__ Relevancy: 87%
4) TSC Treatment, Treatment of Tuberous Sclerosis
Review of TSC Treatment, Treatment of Tuberous Sclerosis. Also offers features & relevant Details.
www.habibintl.com/tsc-treatment.htm Relevancy: 87%
5) Tuberous sclerosis - Treatment
Tuberous sclerosis - Treatment, Tuberous sclerosis is a group of two genetic disor...
www.umm.edu/ency/article/000787trt.htm Relevancy: 81%
6) Tuberous Sclerosis - Causes, Symptoms & Treatment
Tuberous Sclerosis Facts plus the Latest News on Tuberous Sclerosis Treatments - HealthNewsflash
healthnewsflash.com/conditions/tuberous_sclerosis.htm Relevancy: 81%
7) Treatment of tuberous sclerosis
There is no specific treatment for tuberous sclerosis. Treatment plans should be determined on an individual basis.
neurology.health-cares.net/tuberous-sclerosis-treatment.php Relevancy: 80%
8) Tuberous Sclerosis Treatments : Learning Center on Healthline.com
There is no specific treatment for tuberous sclerosis. Because the disease can differ from person to person, treatment is based on the symptoms.
www.healthline.com/channel/tuberous-sclerosis_treatments Relevancy: 80%
9) Tuberous Sclerosis: Treatment & Medication - eMedicine Neurology
Treatment: In 1880, Bourneville first described the cerebral manifestations of this ... Vigabatrin in the treatment of infantile spasms in tuberous sclerosis:
literature review. ...
emedicine.medscape.com/article/1177711-treatment Relevancy: 80%
10) The University of Kansas Hospital - Tuberous Sclerosis
The treatment for tuberous sclerosis is supportive and symptomatic. ... trial to study the effectiveness of the drug rapamycin in the treatment of tuberous ...
www.kumed.com/healthwise/healthwise.aspx?DOCHWID=nord35 Relevancy: 78%
25. eHealth>mHealth
ChildCount+
Texting the health status of sick children to
improve health monitoring, intervene faster,
immunize and treat better
20,000 Nutrition screenings in 9 months – they
found 500 cases of malnutrition, 2000 cases of
malaria
Wouldn’t be possible without a “… community of
innovators, activists and friends…”
Free and open-source software (RapidSMS)
http://mobihealthnews.com/7481/time-magazine-100-includes-
mhealth-thinker/
○ UN Wire, May 6, 2010, “mHealth technologist makes Time’s list of big thinkers”
26. 3 Ways to Submit Your Ideas
Attach your response and send it via e-
mail to: challenge@ostp.gov
Submit a link to your proposal via Twitter
to @whitehouse and include the
hashtag #whgc
Send a link to your proposal via
Facebook.com/whitehouse
Responses are due April 15th.
27. Google transparency
Google unveiled a new tool that reports on gov’t
requests to remove material and data on users.
It should promote a more informed discussion about
government monitoring of the Internet. Future: other
companies?
The number of requests for information from various
countries between July 1 and Dec. 31, 2009.
broken down by country, and if you click on a specific
country, you get details like what percentage of requests
for data removal the company complied with.
Editorial, Google and Government Monitoring, published May 1, 2010,
accessed 1.5.2010.
28. Facebook and your privacy
Since its incorporation just over five years ago, Facebook has
undergone a remarkable transformation. When it started, it was a
private space for communication with a group of your choice. Soon, it
transformed into a platform where much of your information is public by
default. Today, it has become a platform where you have no choice but
to make certain information public, and this public informationmay be
shared by Facebook with its partner websites and used to target ads.
Facebook originally earned its core base of users by offering them
simple and powerful controls over their personal information. As
Facebook grew larger and became more important, it could have
chosen to maintain or improve those controls. Instead, it's slowly but
surely helped itself — and its advertising and business partners — to
more and more of its users' information, while limiting the users' options
to control their own information.
Electronic Frontier Foundation,
http://www.eff.org/deeplinks/2010/04/facebook-timeline, accessed 2.5.10.
29. Why do we have to do all this?
Multitasking, etc
Community has to have a role in therapy
development. If we don’t define and take
charge of that role, it will be decided for us.
There are pressing needs of people living with diseases;
research volunteers need to be protected; even the word
“community” is complex; advocating for specifics for trials;
helping find innovative solutions; making design &
conduct of trials more transparent
32. NIH
A 55-year-old clinical-trials network needs a major
overhaul, according to a report by the Institute of
Medicine, the Washington DC-based health arm of
the National Academies. The Clinical Trials
Cooperative Group Program, funded by the National
Cancer Institute, enrolls 25,000 patients in cancer
trials run by 14,000 researchers at 3,100 institutions
each year. Trials typically take at least two years to
get off the ground, the report says, and funding only
covers about half the costs, leaving investigators to
seek out the difference from other sources.
Nature, News briefing, Published online 21 April 2010 | Nature 464, 1108-
1109 (2010) | doi:10.1038/4641108a
33. Messaging
Audiences choose the news, not vice
versa
Messages must be relevant (nix the time
capsule), concise (bare components),
consistent and memorable
(understandable, not much nuance)
Eye on FDA, 04 May 2010 04:11 AM PDT
34. facebook
Friend or what?
GlaxoSmithKline is on facebook
(19.04.10)
Their 10th latest addition is their 2009
Corporate Responsibility Report (I tried to
open it from facebook, not possible.)
They have 3254 fans, of whom 9 gave
thumbs up for the report. 2 with photos said,
“Go GSK!!” and “It’s immpresive!”, sic
35. The White House Wants to Hear
from You
As a part of its efforts to introduce fully open government, the White House is reaching out to the at-large
scientific community to discuss America's national scientific and technological priorities.
Through AAAS, and our new Expert Labs program, the Obama administration wants to draw on the
collective wisdom of scientists everywhere in deciding which scientific and technological challenges
should be the focus of policy initiatives in the coming years.
In 2009 President Obama provided some examples of what these challenges might be:
Complete DNA sequencing of every type of cancer; smart anti-cancer therapeutics that kill cancer cells and leave
their normal neighbors untouched; early detection of dozens of diseases from a saliva sample; nanotechnology that
delivers drugs precisely to the desired tissue; personalized medicine that enables the prescription of the right dose of
the right drug for the right person; a universal vaccine for influenza that will protect against all future strains; and
regenerative medicine that can end the agonizing wait for an organ transplant.
Solar cells as cheap as paint, and green buildings that produce all of the energy they consume.
A light-weight vest for soldiers and police officers that can stop an armor-piercing bullet.
Educational software that is as compelling as the best video game and as effective as a personal tutor; online
courses that improve when more students use them; and a rich, interactive digital library at the fingertips of every
child.
Intelligent prosthetics that will allow a veteran who has lost both of his arms to play the piano again.
Biological systems that can turn sunlight into carbon-neutral fuel, reduce the costs of producing antimalarial drugs by
a factor of 10, and quickly and inexpensively dispose of radioactive wastes and toxic chemicals.
An “exascale” supercomputer capable of a million trillion calculations per second – dramatically increasing our ability
to understand the world around us through simulation and slashing the time needed to design complex products such
as therapeutics, advanced materials, and highly efficient autos and aircraft.
Automatic, highly accurate and real-time translation between the major languages of the world – greatly lowering the
barriers to international commerce and collaboration.
36. To Participate
You can help the White House determine which scientific and
technological challenges to prioritize as well as advocate for your own
areas of research if you feel that significant breakthroughs are possible.
First, create a succinct description of a grand challenge, and optionally
include metrics of progress, suggested ideas of who could lead the
project, or techniques that could be used to accomplish the goal.
Then, share that idea with the White House via e-mail to
challenge@ostp.gov, or by replying to the White House's call to action
on Twitter or Facebook with a link to your Grand Challenges
submission.
Finally, encourage your peers, friends, and family to participate in the
dialogue as well, either by amplifying your submission or contributing
ideas of their own.
Now, the White House wants your help in shaping the federal
government’s current and future scientific priorities. As scientists and
concerned citizens, we have a great responsibility and a unique
opportunity to be the voices that are helping to define the White
House's scientific agenda. Make your voice heard. Submit your ideas
today.