EDS Patient Registries and Their Importance

EDS Patient Registries and Their Importance
5
(1)

Patient registries aim to help researchers better understand a particular disease, establish best practices, and, ultimately, find a cure. If you have Ehlers-Danlos syndrome (EDS), there are multiple registries that may be of interest to you.

What is EDS?

EDS refers to a group of genetic disorders affecting the connective tissues that provide structure to the joints, skin, blood vessels, and other tissues and organs. Depending on the type of EDS — 13 have been identified — symptoms can range from loose joints to life-threatening complications.

What are patient registries?

In general, patient registries collect clinical data on disease progression, diagnosis, current treatments, and quality of life. Frequently, information is collected over time.

By gathering relevant information from patients, and sometimes their caregivers, scientists can learn more about a disease — EDS, in this case — and its treatment outcomes, as well as the ways in which the disorder is managed.

Registries often allow communication and information sharing among clinicians and other specialists. This could ultimately result in a better standard of care for patients. They also can potentially help researchers uncover commonalities and differences between EDS and related diseases.

Having access to registry data also can help physicians, especially primary care doctors, many of whom may be unfamiliar with rare diseases such as EDS.

Because registries guard your privacy and only de-identified data are shared, they provide a safe way to help researchers overcome scientific gaps.

Finally, through registry questions about your experiences, you’re able to see how your health information fits into the larger disease picture globally. You also may have access to information about opportunities to participate in clinical trials.

EDS registries

There are currently multiple registries that seek to help scientists globally to advance their knowledge of EDS and related conditions.

The Ehlers-Danlos Society EDS and HSD Global Registry is one of them. Applications for enrollment will reopen once the registry moves to a more user-friendly and accessible platform for people with EDS or hypermobility spectrum disorder (HSD).

By joining the registry, you can help map the experiences of those living with EDS, HSD, and related disorders worldwide. Registries facilitate research into the frequency of related symptoms and conditions, and help to discover new forms of EDS and HSD, understand the relationships between the disorders and chronic pain, anxiety, and other problems, and enable the gene search for EDS and HSD.

For another long-term option, the Registry of Ehlers-Danlos (RED) currently is enrolling by invitation and largely aims to, over time, corroborate and integrate several kinds of patient data, including clinical, genetic, and genealogical. The observational study also seeks to correlate genetic background and observable outcomes. The aim is to better understand the disease’s pathophysiology — the functional changes that accompany EDS.

There’s also the EDSers United Foundation Patient Registry for EDS and related disorders. This patient-reported registry asks that diagnosed participants complete a questionnaire about their experience with the disease. Such information could ultimately help improve patient care.

 

Last updated: Jan. 6, 2021

***

Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 0
Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • registries
  • registries
  • EDS in children
  • other conditions, comorbidities

How useful was this post?

Click on a star to rate it!

Average rating 5 / 5. Vote count: 1

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?