“This website, originally created in a collaboration between The British Pharmacological Society (BPS) and the International Union of Basic and Clinical Pharmacology (IUPHAR) and now developed jointly with funding from the Wellcome Trust, is intended to become a “one-stop shop” portal to pharmacological information. One of the main aims is to provide a searchable database with quantitative information on drug targets and the prescription medicines and experimental drugs that act on them….The Guide to PHARMACOLOGY database is licensed under the Open Data Commons Open Database License (ODbL). Its contents are licensed under the Creative Commons Attribution-ShareAlike 3.0 Unported license….”
“Objectives To identify the policies of major pharmaceutical companies on transparency of trials, to extract structured data detailing each companies’ commitments, and to assess concordance with ethical and professional guidance….
Results Policies were highly variable. Of 23 companies eligible from the top 25 companies by revenue, 21 (91%) committed to register all trials and 22 (96%) committed to share summary results; however, policies commonly lacked timelines for disclosure, and trials on unlicensed medicines and off-label uses were only included in six (26%). 17 companies (74%) committed to share the summary results of past trials. The median start date for this commitment was 2005. 22 companies (96%) had a policy on sharing CSRs, mostly on request: two committed to share only synopses and only two policies included unlicensed treatments. 22 companies (96%) had a policy to share IPD; 14 included phase IV trials (one included trials on unlicensed medicines and off-label uses). Policies in the exploratory group of smaller companies made fewer transparency commitments. Two companies fell short of industry body commitments on registration, three on summary results. Examples of contradictory and ambiguous language were documented and summarised by theme. 23/42 companies (55%) responded to feedback; 7/1806 scored policy elements were revised in light of feedback from companies (0.4%). Several companies committed to changing policy; some made changes immediately.
Conclusions The commitments made by companies to transparency of trials were highly variable. Other than journal submission for all trials within 12 months, all elements of best practice were met by at least one company, showing that these commitments are realistic targets.”
“The first human genome was sequenced in 2001 at a cost of $3 billion. Today, human genome sequencing costs less than $1000, and in a few years the price will drop below $100. Thus, personal genome sequencing will soon be widely adopted as it enables better diagnosis, disease prevention, and personalized therapies. Furthermore, if genomic data is shared with researchers, the causes of many diseases will be identified and new drugs developed. These opportunities are creating a genomic data market worth billions of dollars….The Nebula peer-to-peer network will enable data buyers to acquire genomic data directly from data owners without middlemen. This will enable data owners to receive sequencing subsidies from data buyers and profit from sharing their data….”
“Nebula Genomics will have its own coin and go head to head with Ancestry.com and Google-backed 23andMe. George Church, a professor at Harvard and MIT, is taking a different tack than his genetics testing rivals. He’s developed a token-fueled system on the blockchain that monetizes DNA to incentivize members to participate in genome sequencing. It keeps personal DNA data in the hands of the individual — not big pharma — letting them choose if they want to share and monetize that data for research purposes….Based on Professor Church’s research, no other human genomics company even comes close to delivering on what Nebula Genomics can do….Professor Chruch points to open protocol that gives scientists the ability to “aggregate standardized data” across people and databases. It’s unclear whether he plans on launching an upcoming ICO.”
“Shire plc (LSE: SHP, NASDAQ: SHPG), the global leader in rare diseases, has implemented a new publication policy requiring the submission of all Shire-supported research manuscripts to journals that offer public availability via open access, allowing the public to obtain free, unrestricted online access to Shire’s research promptly following publication. Shire’s open access policy, which went into effect on January 2, 2018, was announced today at the 2018 European Meeting of International Society for Medical Publication Professionals (ISMPP) taking place in London, UK, January 23-24….”
“Shire has announced the introduction of a new open-access publication policy that will apply to all future Shire-supported research. In future, all manuscripts pertaining to Shire-affiliated research will be submitted to journals that offer public availability via open access, meaning the public will be able to obtain free, unrestricted and prompt online access to Shire’s research….”
“In a drive towards greater transparency, Shire has said that in future its peer review articles will only be submitted to journals that provide open access to the full text of papers.”
“It believes it is the first biopharma company to implement this open access policy, and also reckons it is the “only company to report the results from all of its clinical studies posted on clinicaltrials.gov”, the US trials registry.”
“Our mission: Promote, coordinate, and facilitate clinical research data sharing through the creation and implementation of a sustainable global data-sharing enterprise. Vivli will establish an independent data repository, analytics platform and in-depth search engine through which individual participant-level data (IPD) and metadata from clinical trials conducted by researchers in academic, industry, foundation, and non-profit entities can be identified, hosted, shared and analyzed. Vivli, as a non-profit organization that will act as a neutral broker, will be agnostic to disease, country, sponsor, funder, and investigator, seeking to serve all elements of the international research community….”
“Vivli, a Massachusetts-based nonprofit, has received $2 million from the Laura and John Arnold Foundation to build a first-of-its-kind data sharing platform for clinical trial research. The innovative platform will include a data repository, analysis tools and a dynamic search engine. It will provide transparency and access to clinical research data from around the globe, break data out of existing silos, and accelerate scientific discovery to improve human health.”
“The starting point will be approximately 1,000 human kinase inhibitors carefully selected from a library of chemical compounds donated to the partnership from eight pharmaceutical companies. The set will be distributed without restriction to scientists studying other plants and traits, thus serving as a broadly useful platform. The team has agreed to operate under open access principles —specifically prohibiting filing for IP on any of the results and will communicate the results widely….”