Data Sharing Team by Barbora Šindelářová https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd en-us 2024-02-19 14:49:59 UTC 2024-04-16 10:03:50 UTC hello@padlet.com https://padlet.net/icons/png/1f4f2.png European Reference Networks barborasindelarova1408 https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888246640 2024-02-19 14:55:01 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888246640 ERN Animation frocha2001 https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888291723 2024-02-19 15:39:22 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888291723 Hernâni Zão emails mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888374282 hernanizao@gmail.com

holiveira@uevora.pt

]]> 2024-02-19 17:07:51 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2888374282 Week 3 - Stakeholders https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896260188 2024-02-26 16:38:35 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896260188 Pedro Ferreira email mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896301542 pferreira@fpce.up.pt

]]> 2024-02-26 17:05:17 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896301542 Rare disease patients' experiences with data sharing - playlist mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896375737 https://www.youtube.com/watch?v=sVBZiRCgNCw


https://www.youtube.com/watch?v=3JKLjzVh1Xg


https://www.youtube.com/watch?v=HAn3pTNDodE


https://www.youtube.com/watch?v=OpbUPkZNub0


https://www.youtube.com/watch?v=a4CwmVueZ8c


https://www.youtube.com/watch?v=9miMGLYq-88


https://www.youtube.com/watch?v=C6nbs2G44ls


https://www.youtube.com/watch?v=fscaRh2OtXk --> very interesting


https://www.youtube.com/watch?v=aHOGCKAX7-8


https://www.youtube.com/watch?v=evC3HGI-Lnc

]]> 2024-02-26 17:57:31 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2896375737 Rare diseases in the Czech Republic https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897827855 Czech Association for Rare Diseases

https://vzacna-onemocneni.cz/about-us/


Patient Hub - a project run by the Ministry of Healthcare


https://www.pacientskyhub.cz/en/



]]> 2024-02-27 16:10:40 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897827855 Orphanet https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897828337 2024-02-27 16:11:00 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897828337 Data Sharing Initiatives in Healthcare https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897937413 2024-02-27 17:26:49 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897937413 Open Science and Rare Diseases https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897939582 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7660964/


]]> 2024-02-27 17:28:35 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897939582 Data databases https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897941060 https://globalbiodata.org

https://elixir-europe.org/platforms/data/core-data-resources

]]> 2024-02-27 17:29:42 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897941060 annelirannak https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897972242 https://www.kliinikum.ee/harvikhaigused/]]> 2024-02-27 17:53:48 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2897972242 Rare diseases in Portugal mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2903381913 2024-03-03 16:20:29 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2903381913 Julie Power email (our patient) mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2904686409 vasculitisireland10@gmail.com

]]> 2024-03-04 15:39:23 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2904686409 Citizen Science book summary barborasindelarova1408 https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2904892322 Main points/buzzwords:


inclusivity

gaining support

overarching conceptual framings

capacity building

management

dynamic informed consent

data quality

data interoperability

data reuse

stakeholders

conceptual model of a project

addressing real-life problems

shared language

participation

examples of projects

social innovation

fundings

design and function of an application

social media


]]> 2024-03-04 18:05:45 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2904892322 Questions for stakeholders barborasindelarova1408 https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2905928760 hello, please share all your ideas down below about possible stakeholders and questions that we would like to ask them


  • Are there any specific guidelines or regulations we need to adhere to when handling sensitive health information?

  • Are there any existing security measures or protocols that we should integrate into our data-sharing practices?

  • What existing services or platforms should we consider for seamless data sharing between different entities?

  • What incentives can be provided to encourage individuals and organizations to actively participate in data sharing for rare diseases?

  • How can we involve the rare diseases community in decision-making processes related to data sharing?

  • Are there specific community representatives or advocacy groups that should be consulted regularly?

  • Are there any legal or regulatory challenges associated with data sharing in the context of rare diseases that we should be aware of?



]]> 2024-03-05 09:06:22 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2905928760 Interview with medical geneticist - relevant excerpts mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2928700953 2024-03-21 14:31:03 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2928700953 Nathan Lea email mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930193849 nathan.lea@i-hd.eu



]]> 2024-03-22 14:01:38 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930193849 Interview with Julie mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930331749 2024-03-22 15:55:41 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930331749 Needs and Personas mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930964159 2024-03-23 15:09:22 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2930964159 Topics in the interviews that match our needs mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931147166 2024-03-24 01:16:30 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931147166 The European Health Data Space (EHDS) mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931572803 2024-03-24 19:56:27 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931572803 The electronic health record in the EU mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931573473 2024-03-24 19:58:04 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2931573473 Miro board 25/03 + 01/04 mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2939627971 2024-04-02 00:40:29 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2939627971 app VASCULITIS mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2944614770 2024-04-05 14:06:53 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2944614770 APP VASCULITIS mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2944615392 2024-04-05 14:07:27 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2944615392 Presentation slides mariapbhbarbosa https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2946837759 2024-04-08 13:47:26 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2946837759 Mobile apps barborasindelarova1408 https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2956619248 2024-04-16 10:03:50 UTC https://padlet.com/barborasindelarova1408/1kumc6gkaj5oafvd/wish/2956619248