We are linking PLwRD* Rare Disease people with data driven health researches
*PLwRD – People Living with Rare Disease
Make Your Rare Health Data ready for the future
People are the Legal Owners of their Health Data in the EU.
Q&A
The answers also include examples of specialized organizations for different topics
Put Your Health Data to work for you
By putting your Rare Health Data to work, you enable the fast and reliable health research not only for your self but also for the others.
The biggest challenge with the fast and accurate Health researches – until resent years – has been
https://datasaveslives.eu/why-is-health-data-important https://myhealthdatapath.com/ https://www.rarelifesolutions.com/ https://ncats.nih.gov/radar https://rarediseases.org/iamrare-registry-program/ https://c-path.org/ Press release 8th of December 2022 https://www.mydata.org https://t.me/exponential_healthtech_dao (Telegram group) https://solve-rd.eu/the-project/ https://www.patientslikeme.com/
The number of the data is the key
After 20 years of hard work – Rare Genome Data now finally available.
https://b1mg-project.eu/
More than 20.000 datapoints are needed to make any significant research, this is still a big challenge for researchers.
Today researchers already have access to thousands of different records and datapoints, but; the Fundamental probem still is that those registries are all islands of their own – with different registry technologies and juristrictions.
All Data driven researches comes with data challenges
We can bypass traditional research challenges with ERDR voluntary data donations.
“When comparing digitalized data driven researches to any traditional patient reqruiting based researches with the Data Driven Registry Research we can ramp-up and boost the research process and save money and time”.
Why don’t we just get started and make use of health data more effective by making also our own health data available for research use.
Data protection and privacy
https://veil.ai https://www.njordlaw.com/ https://www.twobirds.com/ https://www.dilaw.fi https://1001lakes.com/ https://www.spesior.com/ https://findata.fi/en/ https://e-estonia.com/solutions/cyber-security/ksi-blockchain/ B1MG Secure cross-border data access roadmap https://www.raredisease.org.uk/rduk-news/one-in-a-million/ University of Oxford Rudy Study Digital Twins: https://www.imw.fraunhofer.de/en/press/press-releases/medi2cin.html
My Rare Disease
https://www.findzebra.com https://rarediseases.info.nih.gov/diseases/categories https://www.orpha.net/
Where can I find My Rare Health Data?
We help you to find it
The Health Data defined by ERDR is;
– Registry Data
– Clinical Trial Data
– Genomic Data
You can start by requesting your Rare Health Data from different Health Data registries with ERDR AI assisted “Health Registry Search Engine”
https://www.kanta.fi https://www.finbb.fi/en/ https://www.bbmri-eric.eu/ https://www.finngen.fi/en/samples_come_from_biobanks https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-get-your-medical-records/ https://www.healthit.gov/how-to-get-your-health-record/get-it/ https://vp.ejprarediseases.org/ https://www.ern-rnd.eu/ern-rnd-registry/ https://www.eithealth-scandinavia.eu/biobanksregisters/registers/estonia/ https://directory.bbmri-eric.eu/#/
New standardised RHD can be created by DNA Sequencing
Donate your RHD securely for research use through the ERDR community
Benefitting from MyRHD
By RHD donations You are the first beneficiary from Your RHD.
You can benefit from Your RHD by yourself by getting better and faster health care and treatments in the European Union.
Same way your RHD helps fellow Citizens in the European Union by helping researchers – You also help the others.
In ERDR community peer groups and individuals can ask help from people and provide help for the others.
Benefitting economially from Your RHD with ERDR community.
If you are looking for financial benefit from Your RHD, for yourself or for the others, e.g. health tokens – health programs, etc., there will be a large number of different health care related services and operators in ERDR community accepting ERDR credits as payments.
Health Data Platforms and Operators
https://bcbmedical.com/ http://www.myhealthmydata.eu/ https://www.myhealthdata.com/ https://findata.fi/ https://en.osse-register.de/en/ https://ncats.nih.gov/radar https://wfh.org/data-collection/ https://eu-rd-platform.jrc.ec.europa.eu/erdri-description_en https://raredisease.net/living/social-health-network https://www.wegohealth.com/ https://research.sanfordhealth.org/rare-disease-registry https://www.mendelian.co/solution https://www.rarelifesolutions.com/ https://healx.ai/ The registries don’t need to be that complicated: https://youtu.be/VOMSq1D24Fc https://www.efpia.eu/ https://c-path.org/programs/rdca-dap/ EU Uniform Rare Disease Data format