EDS Patient Registries and Their Importance
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.
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
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