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- 1. Evaluation BBMRI - (preliminary) results BBMRI Stakeholder’s Forum: Patient Working Group Paris 15 December 2009
- 10. Social Network analysis - result FP5
- 11. Social Network analysis - result FP6
- 12. Social Network analysis - organisations
Notas del editor
- Good morning to you all. I’m glad that I have the opportunity to present to you our results. I have about 20 minutes to talk you through a whole lot of work that we carried out for WP1/7 of BBMRI in the last year. Our objective was to 1,and 2. Obviously this has to be carried out while BBMRI was developing itself as well. What did we do, to answer the research questions. I will show you some concise data on the activities in red. And actually the validaton by stakeholders is today, so by you as a very well informed audience.
- These are the ten case studies that we studied. As you may be able to see it is a mixture of population based, and case control biobanks, that show a nice geographical spread over Europe. I won’t go into detail on each of the cases but use them to show a limited set of aspects that turn out to be very relevant in the ecology of biobanking. These topics are shown in the next couple of slides.
- The first slide shows an overview of the maturity and the orientation. Please only note the numbers (behind the numbers are the cases, as a memory stock for me) The majority started 5-7 years ago, before 2000 only a few biobanks were operational, and we included them becvcaise we wanted to see real developments and not plans. Also, the biobanks are mainly nationally organised. You can see that the more recently started actvities tend to be more internationally organised
- The second slide shows numbers, both for collection as for distribution. One of the reasons to start with BBMRI is to get access to larger collectiosn of samples in order to study multifactorial diseases and rare diseases in more detail. Surprsingly the size of collections doesn’t relate to maturity or orientati Other than that in collection a truly big spread is shown. Another interesting finding is that in terms of ditribution, 50% of the cases don’t actually know how many samples were distributed. As you vcan see, the patient -run biobanks do exactly know, as they are aware of the cimmunity they serve
- In terms of the organisation of biobanks: we have looked at the location of the repositories: here it is important to that a network can have a central repository, and the other way round, that a biiobank infrastrcuture can be kept at more than one place. In terms of the lower bottom of the table: all biobanks are involved in research, of course, but the more it develops the more it turns into a infrstructure, and on top of that, an network in which data are shared. As you can see coincide distributed bioabnks with a network structure.
- Outreach activities refer to activities that biobansk display as part of their exteral strategy.I’d like to stress here that this iis not measured as a result, but as an activity thatmay lead to a result. But the activities are only partly reported, and sometimes only mentioned by interviewees, showing that they often are not seen as an important factir. Given these reserves, there are notable differences between biobanks.
- Contact people from DeCode. Substitute for DeCode?? Funding is extremely important in the life time of a biobank. The mixed funindg model refers to the fact thet none of the cases has a single funder. The mixed funding has also to do with research, and the fact that biobanking is often not made explicit. Governmental funding is significant for sustainabiity. Networking does resuce cost, but this doesn;t count for the set up of any infrastrcutural facility that undelies the network.
- The SNA is usewd to show the current status of the BBMRI network. And this first slide is to explain the next slides that I will show you
- What des this piture show yiu, That there are a fewe ineterconnected networks, of which the onde with the green an red squares and rounds are crucial. Th gree ones rpresent BBMRI memeber or associates. S you can see BBMRI is not in every network, but it is mportant player looking at the size of the nodes. Here the core of BBMRI was established/
- In FP 6 the network has extended, and mind you these are partticipants that are acting in more than ione projetc. So biobanking is b ooming. But there are still a lot of red squares which are not BBMR.... The network is bigger, but the role of BBMRI members is slightly less strong. Might not be the right model for later evaluation in the context of the ERI concept. In this model. Governments are not included
- Does show the early connection of the BBMRI core member since FP5. Cancer biobanking is not so well connected
- Different expectations How do you work in the networks, local auditing of the projects, funding Which have an impact on the indicatiors Focus on the outside, increase awarness of what exist outreach. Have to convince funders to avoid redundance and to save money for other research
- Different expectations How do you work in the networks, local auditing of the projects, funding Which have an impact on the indicatiors Focus on the outside, increase awarness of what exist outreach. Have to convince funders to avoid redundance and to save money for other research
- Different expectations How do you work in the networks, local auditing of the projects, funding Which have an impact on the indicatiors Focus on the outside, increase awarness of what exist outreach. Have to convince funders to avoid redundance and to save money for other research
- As there is
- Different expectations How do you work in the networks, local auditing of the projects, funding Which have an impact on the indicatiors Focus on the outside, increase awarness of what exist outreach. Have to convince funders to avoid redundance and to save money for other research