We need worldwide patients registries to help inform research and a better understanding of these conditions, globally. #AutoinflammatoryAware #patientregistries #prevalence

Reabro el hilo para añadir la última charla en #NaukasBilbao: he hablado de la decepción que es para muchos pacientes no entrar en un #ensayoclínico... y las razones que hay para hacer esta selección.

#RareDiseases #ClinicalTrials
#PatientRegistries #NaturalHistory
youtu.be/IaoTVhLzP2E?...

As someone who used to build large-scale #patientregistries, including a few for #autism, I can offer a perspective. First, we need to untangle fundamentally different kinds of registries that must protect privacy in distinct ways.

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#MedSky #autism #registry #informatics #healthinformatics

We're excited to attend the #SfEBES2025 #Conference in #Harrogate next week from 10-12 March'25!
Stop by to discuss how we can #collaborate on improving #clinicalinsights, #treatmentpathways, and #RealWorldData for diverse #patientprofiles.

#Endocrinology #PatientRegistries #EndocrineResearch #SfE

I’ll be there in person and looking forward to discussing how the PeopleWith platform can help streamline #PatientEngagement and contribute to the development of next-generation #PatientRegistries.
#SocietyforEndocrinology #ClinicalInsights #TreatmentPathways #SfE

See you in Harrogate :)

At the Irish Health Research Forum, we're discussing the vital role of patient registries. We’ve just shown this powerful video on why they matter. @hrci.bsky.social
#HealthData #PatientRegistries #RareDisease #HealthResearchMatters

m.youtube.com/watch?v=1hKH...