Real-world data registries



Article By: The Society for Endocrinology
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The Society for Endocrinology has joined forces with PeopleWith to develop the next generation of real-world data registries to advance understanding and optimise patient care.



The Society for Endocrinology has joined forces with PeopleWith to develop the next generation of real-world data registries to advance understanding and optimise patient care.

By harnessing the power of the patient's voice, you will be able to:

1. Access comprehensive national databases of endocrine conditions:

Real-world data registries will allow you to make well-informed decisions about your patients' health, drawing from a wealth of holistic data. Think of it as having a global network of patient insights to inform your clinical judgments.

2. Empower your Patients to manage their health:

With this collaboration, you'll empower your patients to take charge of their health. They can actively monitor their symptoms, track diagnoses, and manage medications. This means you will have a more comprehensive overview of patient histories, resulting in more effective treatment plans.

3. Access enhanced reporting with Patient-reported Outcome Measures (PROMs)

Patient reported outcomes puts the patient front and centre. Gaining insight into your patients’ experiences will aid your clinical assessments and help you tailor treatments for better outcomes.

4. Advance research in endocrine care

These data registries will foster collaboration among healthcare professionals, researchers, and patients. They will allow the ability to identify trends, support evidence-based practices and provide new insights into endocrine care. By encouraging your patients to participate, they will not only benefit but help advance the entire discipline.

Active real-world data registries

- National Obesity Database
- UK Acromegaly register

How can I get involved?

We're working on a condition-by-condition basis, with specific configuration, and targeting over 30 endocrine conditions over the next ten years.

This collaboration represents a pivotal moment and will help transform endocrine patient care. We can’t wait to see the positive impact it will have for both healthcare professionals and patients alike.

If you would like to find out more about data registries and how you can get involved contact Jessica Davies (Clinical Practice Manager) via clinical@endocrinology.org or Carys Richards (Partnership Manager) via Carys.richards@endocrinology.org.



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