Events

Cambridge Rare Disease Network Summit: rare diseases are rare but rare disease patients are numerous

On the 23rd of October, Robinson College of the University of Cambridge hosted the 3rd annual CRDN summit. The summit brought together patient groups, healthcare professionals, academics, researchers, biotech companies, and the pharmaceutical industry in a spirit of collaboration, innovation and passion to re-imagine and re-invent the Rare Disease patient journey. The meeting started with the keynote lecture by Dr Ségolène Aymé – the founder of Orphanet. Orphanet is one of the largest and oldest resources on rare diseases which has a goal to improve the diagnosis, care and treatment of patients with rare diseases.  Its motto is: rare diseases are rare, but rare disease patients are numerous. In her talk, Dr Aymé gave an overview of the rare disease landscape, spoke about new technologies and tools available to patients, carers, and researchers,  and shared several warnings. It is important to keep in mind that medical research focused on the patients’ diseases became driven by data, technologies and IT outputs, which means that the leadership switched from MDs and biologists to molecular and IT scientists. The main thing is, therefore, to remember  that tools, algorithms and concepts from digital science and technology, valid for complicated mechanical systems, cannot address complex […]

Highlights of 2015 – Events

2015 was a great year for DNAdigest! We organised more events, welcomed more volunteers to the team and increased our output of online communications and blog generation! It has been a joy to watch our followers and online community grow with us and as we approach Christmas and the end of the year, we want to dedicate this blog post to looking back over 2015 and celebrate the achievements we made together!   Events: February 28th – DNAdigest Hackday Only 2 months into 2015 and we hosted our first hackday. We invited our followers and the local scientific community to a day of brainstorming, ideation and hacking for the benefit of genetics research. Held in the our new office at the Future Business Centre in Cambridge, we welcomed and encouraged geneticists, bioinformaticians, software developers and anyone with a interest in public genomic datasets to join forces. Together we addressed how to make a ‘recommendation service’ that will recommend datasets that a person may find interesting based on their dataset access history and how to make an automated alert system that notifies a user when a new dataset is added or made available. Read more . . . August 21st – DNAdigest Symposium In August we […]

DNAdigest Surveys the BioData World Congress Attendees

On 21-22 October DNAdigest attended the BioData World Congress 2015 held at the Wellcome Trust Genome Campus in Hinxton. Founder and CEO Fiona Nielsen not only attended the majority of the talks over the two day event, but also took part in the Open Innovation panel and played the role of Amy Friedman in the ‘Genomics in Play’ drama. Additionally, DNAdigest had a stand in a prime location at the event, which was manned by volunteers Craig Smith and Charlotte Whicher. If you’re interested in what people were talking about on Twitter at the conference – you can read the DNAdigest BioData World Congress Storify complete with pictures of presentations from guest speakers and various quotes from talks. Thanks to some strategically placed sweets, we were able to talk to lots of the attendees as well as some of the guest speakers including Dr Robert Green (Harvard Medical School), Dr Bob Rogers (Intel Corporation) and Dr Niklas Blomberg (ELIXIR). During the event, we conducted a short online survey on the genomic data searching / accessing / sharing habits of the attendees and speakers. In exchange for completing the survey we gave away DNAdigest Mugs and T-shirts to 6 lucky winners. Our survey consisted of 3 simple multiple choice questions: The results speak for […]

DNAdigest symposium: summary

Last Friday, 21/08, Wayra hosted the DNAdigest symposium “Incentives for data sharing”. On a hot summer Friday in London, we asked the attendees: “How can we create incentives for data sharing in genomics research?” Despite the summer break, we had excellent speakers and a very engaged audience. Both attendees and speakers applauded the great quality of the discussions and the cosy atmosphere of the event. Morning session In the first part, Natalie Banner from the Wellcome Trust, Neil Walker from the University of Cambridge and Shahid Hanif from the Association of the British Pharmaceutical Industry presented multiple prospectives on data sharing. Natalie Banner made it clear that the objective of the Wellcome Trust as a funder is to maximise the benefits for health and society, and gaining the best possible impact of their funding for research. Best possible impact also means maximising data use and utility for reuse, which is why the EAGDA is investigating best practices for data sharing. Natalie’s presentation is available here. Neil Walker presented how funder policies can be difficult to implement for the individual researcher and shared many anecdotes on data sharing and how he uses data management plans to outline for funders how data will […]

Notes on DATA SHARING from the BioSHaRe and HandsOn: Biobanks conferences

Two exciting conferences for those interested in data sharing On 28-31 July 2015, Università degli Studi di Milano-Bicocca hosted the BioSHaRE and the HandsOn: Biobanks conferences. The first one, BioSHaRE, focused on the tools and services for data sharing developed by the EU project BioSHaRE. It is a collaboration between 14 institutions from Europe and Canada which aims to facilitate data harmonisation and standardisation, data sharing and pooling across multiple biobanks and databases. Their recent catalogue of tools encompasses the following areas: data description, presentation and search (Cafe Variome, OmicsConnect, Mica, MOLGENIS/Observ-EMX); data harmonisation across databases (BiobankConnect, DataSchema, EnviroSHaPER, Opal, SORTA, Vortex/Spa); data analysis across databases (DataSHIELD, ESPRESSO); contributor recognition (BRIF, ORCID); standardisation of sample handling (standards and recommendations); ethical, legal and social implications (ELSI guidances, ECOUTER). The HandsOn: Biobanks conference attracted researchers from biobanks from Europe, Japan, and Canada. The diverse programme of this event covered multiple aspects of biobanking, such as sample collection and storage, IT infrastructure and interoperability, ethical and legal issues. One of the current challenges for biobanks as well as for many other data resources is exposing their data to the interested community and making their data usable. This requires, among other things, smartly organised catalogues […]

symposium

DNAdigest symposium: incentives for data sharing – London, 21/08/2015

A medical doctor may be inspired to help people recover from injury and disease, a scientific researcher may be inspired by the opportunity to provide new insights to the world, but in their daily work what inspires the activities of a researcher? Many voices in the research community are talking about what the best practices for efficient and ethical data sharing should be in order to enable reproducible research, more reliable results, and faster diagnostics. But what use is the identification of best practices if we do not know what incentives will drive the research community to adopt them? Register for the DNAdigest symposium – August 21 from 9:30am at 3rd floor Shropshire House, 10-12 Capper Street, London At this DNAdigest symposium, we are inviting researchers, clinicians, patients, policy makers and the medical genomics community to discuss:  “How can we incentivise best practices for data sharing in genomics?”  The agenda will contain presentations giving different perspectives on data sharing and incentives, including presentations from Wellcome Trust (the largest research funder in the UK), bioethicists, data citation experts, and from the individual researchers. — SCHEDULE — 9:30 Arrivals (Tea/coffee is available) 9:45-10:00 Introduction to DNAdigest and the outline for the day Part I “Multiple perspectives on data […]

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