The Ehlers-Danlos Society EDS and HSD Global Registry & Repository

JOIN THE EDS & HSD GLOBAL REGISTRY & REPOSITORY TODAY! 

HELP PROGRESS RESEARCH, TREATMENT, & UNDERSTANDING.

In order to continue to research for our future, we are delighted to announce our new EDS and HSD Global Registry and Repository. This platform, in partnership with LunaDNA, will allow the EDS and HSD community to take part in research.

The EDS and HSD Global Registry and Repository will help researchers throughout the world to advance understanding of the EDS, HSD, and related symptoms and conditions.

Each person who joins will help:

  • Map the experiences of those living with EDS and HSD, globally. 
  • Enable the gene search for hypermobile EDS (hEDS) and hypermobility spectrum disorders.
  • Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
  • Discover new forms of EDS or HSD.
  • Understand the relationships between EDS and HSD, and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, and autonomic disorders.

Participation is free to all, with global access available—no matter where you live—and more languages available soon. You can now join via a smartphone or desktop device! 

New EDS & HSD Global Registry Members

Our registry is currently under maintenance and will be back up and running ASAP. Please submit your name and email address here to be notified when the registry is available.

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Existing EDS & HSD Global Registry Members

If you have previously been a member of our EDS & HSD Global Registry, you should have now received an email, which will give you details of how to sign up and a unique link for you to follow to sign up to our new LunaDNA hosted EDS & HSD Global Registry & Repository.
By using this unique link, we will be able to connect your previous registry account to the new account. (Please note this migration of data has not yet occurred and you will not be able to see the old registry data on the account at this time.)
If you wish for your old and new registry accounts to be connected, please do not sign up to the LunaDNA registry as a new user, but instead use the link in your email.

If you did not receive an email with a link, please contact us using this contact form and we will be in touch shortly.

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In order to continue to research for our future, we are delighted to announce our new EDS and HSD Global Registry and Repository. This platform will allow you to complete surveys and share your medical information in order to assist with research into the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders. 

LunaDNA

Our new registry partner is a company called LunaDNA. You will see their logo on the screens you use to enter your information and sign up to the new registry.

LunaDNA powers the new registry system using state-of-the-art technology, including privacy and security features that comply with (and exceed!) all of the national and international requirements like HIPAA, GDPR and CCPA.

What is a registry?

A registry is a collection of health information about a group of individuals who share a condition or experience. As much as possible, health information is standardized to ensure that information from one person can be easily compared to information from another person. Health information can be obtained directly from individuals or from healthcare providers through a variety of methods: surveys, narratives about a patient’s medical history, document submission, integration of electronic health records, and even sample collection. Depending on the registry, researchers can then examine this information for one or more purposes.

What is a repository?

In addition to the EDS & HSD Global Registry, the new platform is also allowing us to launch our first Global Repository. The repository allows you to upload genetic data reports from previous genetic testing you may have undergone.
At this time we are able to accept genetic data from:

  • 23andMe,
  • MyHeritage,
  • Family Tree DNA
  • Ancestry DNA.

We are currently working with LunaDNA (the hosting platform of our EDS and HSD Global Registry and Repository) to expand the genetic labs we are able to work with in order to accept genetic data from a wider range of laboratories in the future.

What is the purpose for the EDS & HSD Global Registry?

The EDS and HSD Global Registry will facilitate medical research for ALL types of EDS, HSD, and associated symptoms and comorbidities. Among these projects is an ongoing study of whole genome sequences in individuals meeting the 2017 hypermobile Ehlers-Danlos syndrome (hEDS) criteria. More information about the HEDGE Study can be found here. If researchers can identify hEDS genetic variants, future studies can then examine patients with hypermobility spectrum disorders (HSD) to determine how often these variants appear in that population.

What type of registry is this?

The EDS & HSD Global Registry and Repository uses a database platform called LunaDNA. You can find out more about LunaDNA here.

How do I know whether I am eligible to participate in the registry?

Participants are eligible to participate in the registry if they have been diagnosed with any form of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) or suspect they may have one of these syndromes.

Where will my info and data be stored?

The EDS & HSD Global Registry and Repository data is stored on the LunaDNA platform. This is set up on a GDPR compliant server that is under password protection in a secure environment. The system uses Amazon Web Services (AWS) with servers located in the United States.

How is my data kept secure and private?

Your privacy and security are extremely important to us. We use industry best practices to protect your data and your anonymity.
Members’ information is stored, transferred, and processed using HIPAA-compliant privacy and state-of-art security measures. Data is stripped of personal identifiers (de-identified), all personal information and health and DNA data is encrypted, and personal information is stored in a separate environment from your health and DNA data.

Who has access to my data?

Users decide who has access to their data and how to share any and all information provided in the registry by customizing their privacy settings. Once a user has registered and created a profile, they can review and set these privacy settings using the appropriate activity on their dashboard. With your initial consent, The Ehlers-Danlos Society research staff and medical and scientific boards will have access to your data.

What does the ability to choose my own data sharing, privacy, and access settings mean for me?

When you choose your data sharing, privacy, and access settings, you have the power to decide whether to share information just with The Ehlers-Danlos Society, or with other researchers too. You also have the power to decide whether to just share health information, or if you like, to share your contact information and learn about new research studies. These settings are unique to each individual and their preferences, and can also be changed over time.

Can I access and update my data at any time?

We believe your data should be in your control at all times. You control what data you share with us.
From your ‘My Data’ page, you can also choose to download your own data that you shared with LunaDNA, at any time.You can also choose to delete some or all of your data or update your permissions and share settings related to your data through the ‘My Data’ section of your registry profile.

How is my information protected in the new registry?

  1. You choose what questions you answer, studies you take part in, and what medical, health or genetic information you include.
  2. You have control. Researchers cannot take your data out of the system, and you can always decide to stop sharing it.
  3. Any personal data that could be used to identify you is also stored separately from the personal health data you share. This means that your shared data is always de-identified when researchers see it.
  4. The system also makes a note each time someone accesses your de-identified data. This ensures accountability and traceability for any person who accesses your data in any way.

More information is available in LunaDNA’s SEC filing and their updated Privacy Policy and Terms of Use documents.

Can I participate in other studies based on this data?

Users are encouraged to participate in other studies when they meet eligibility requirements for that research study.

What are my options for two-factor authentication if I don't have a cell phone?

If you don’t have a cell phone on which to receive text codes, you can create a free Google Voice account. Google Voice acts like a mobile phone and allows you to receive text codes in your browser.

Here is a link for more information, please visit: https://voice.google.com/u/0/about

 

I was registered on the previous version of the EDS & HSD Global Registry. Do I need to re-register?

At this time we are not able to migrate user profiles or data across from the previous registry platform, but in the future we hope that this will be possible. If you were registered previously you will have received an email inviting you to re-register via a link on the email. Using this link will allow us to connect your profiles and accounts from one registry platform to the other
Your data from the PEER registry is being stored on a secure server and this connection will allow us to match your data should this be required for studies such as the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study. 

 

I was previously registered. What about all the surveys I’ve already done and data from the previous registry?

In the new ESD and HSD Global Registry, we will be focussed on collecting new data from you. The data from the previous registry is securely stored at this time and using the emailed link will allow us to connect these two profiles, however data will not be seen on the new LunaDNA registry at this time. 

 

Why did we relaunch our registry?

In order to continue to research for our future, we made the decision to move our registry from the previous setting to the new LunaDNA platform. This platform is more user friendly, mobile responsive and offers enhanced security which will allow us to continue to protect your data and allow you easy access to keep this up to date and participate in future surveys and research.

I’m not clear what is involved in being part of the registry and would like a bit more info.

If you have further questions, please contact us here.

What info do I need to provide? How demanding might participation prove?

The surveys consist of questions ranging from your demographics, health information, diagnosis, and symptoms related to your condition. In addition there will be questions regarding your interest in further research. Joining the EDS & HSD Global Registry & Repository can take up to  30 minutes to complete, depending on the information you provide. Participating in additional surveys (such as the Family History survey) may take additional time.

Will my data be owned by The Ehlers-Danlos Society, the researchers, or someone else? Can it be sold or used by third parties, i.e. universities, consumer groups, medical providers, etc.?

You own your data. You can download it—or require it to be deleted from the LunaDNA system—at any time. Your data will never be sold.  We will only share it with your express consent. However, if you do consent to allow your data to be used in a research study, you may not be able to require that research team to delete it from their data, as that could compromise the integrity of the entire research project.

 

If just anyone can sign up, how will this registry be verified? Will there be a requirement for a physician verification of a type of EDS or HSD for registration?

The survey questions are designed to determine the sources of various elements of information as well as establish diagnostic certainty. If you have given permission to share your information, researchers are able to sort and filter the registry data, so they can assess the information in context. While it could be helpful to have trained clinicians complete the Registry for each person, this is not practical from either the availability of trained clinicians or funding. Thus, we have designed the Registry for individuals to complete without professional assistance, intended to maximize accuracy of answers. Finally, registries often serve as a first step in research protocols, to screen people and potentially to invite them to enrol in studies which may involve in-person evaluation or the requirement to complete further surveys or submit further supporting evidence.

Can I use the registry from my cell phone?

Great news! Our new registry and repository platform is now mobile responsive and can be accessed from computers, tablets and cell phones.

Can a relative complete the survey on my behalf?

Yes if you are unable to complete the survey or if you are a child under the age of 18 years old, a relative can complete the survey on your behalf.

Minors – Accounts for Under 18s
LunaDNA is not designed for, intended to attract, or directed toward minor children under the age of 13. Only persons age 18 or older (an “adult”) may establish an account in LunaDNA and contribute Shared Data or Personal Data on their own behalf.  A parent or legal guardian (either, a “guardian”) of a person under the age of 18 (a “child”) may create and control a Member account on behalf of the child (“Minor Account”) and provide Shared Data and Personal Data for the child until the child reaches the age of 18.

  • Within a Minor Account, and as long as the child remains under 18 years of age, a guardian may act on behalf of the child in such activities including but not limited to: (a) consenting via the LunaDNA consent, (b) sharing the child’s Shared Data and Personal Data, and (c) responding to research requests (if the guardian has chosen to allow such requests in the privacy settings).
  • The guardian’s contact information linked to the Minor Account is considered Personal Data associated with the guardian’s account.
  • Currently, a Minor Account is not eligible for the issuance of shares in LunaDNA.
  • The guardian may choose to convert a Minor Account to an account directly in the child’s control (a “conversion”) once the child is at least 13 years of age and is eligible to act on their own behalf for sharing and controlling their personal data under relevant laws and regulations. Following a conversion, the consent for use of the child’s Shared Data is revoked unless and until the child re-consents to the LunaDNA consent on their own behalf. The guardian is responsible for confirming the child is eligible to control their own account and consent on their own behalf based on the applicable legal requirements in the jurisdiction in which they live prior to initiating a conversion.
  • If the guardian has not completed a conversion prior to the child’s 18th birthday, then upon the child’s 18th birthday, the guardian will be locked out of the child’s account, except to perform a conversion, and the consent for use of the child’s Shared Data will be revoked. Following conversion, the former child beneficiary of the account will have the option to re-consent to the LunaDNA consent on their own behalf.
  • The LunaDNA Consent Agreement details what happens when consent is revoked.


Wards
LunaDNA recognizes that some adults (18 years of age or older) may not be able to create or manage their own accounts due to health conditions or legal circumstances (i.e. they are “incapacitated”). We refer to these adults as “wards”. An individual to whom the ward has granted authority to act on their behalf, which we refer to as a caregiver-life proxy (or “caregiver”), may establish an account in LunaDNA and contribute Shared Data or Personal Data on behalf of their ward.

  • Within a Ward Account, and as long as the adult remains incapacitated, a caregiver may act on behalf of the ward in such activities including but not limited to: (a) consenting via the LunaDNA consent, (b) manage the Ward’s privacy settings, (c) sharing the ward’s Shared Data and Personal Data, and (d) responding to research requests (if the caregiver has chosen to allow such requests in the privacy settings).
  • The caregiver’s contact information, linked to the Ward Account, is considered Personal Data associated with the caregiver’s account.
  • The caregiver must agree to convert a Ward Account to an account directly in the ward’s control (a “conversion”) if the ward re-establishes capacity and is capable of acting on their own behalf for sharing and controlling their personal data under relevant laws and regulations. Following a conversion, the consent for use of the ward’s Shared Data is revoked unless and until the ward re-consents to the LunaDNA consent on their own behalf. The caregiver is responsible for confirming the ward is capable of controlling their own account and consent on their own behalf based on the applicable legal requirements in the jurisdiction in which they live prior to initiating a conversion.
  • The LunaDNA Consent Agreement details what happens when consent is revoked.

Whom should I contact if I have additional questions?

The EDS & HSD Global Registry and Repository data is stored on a complaint database system called Luna DNA that is under a password protected secure environment. LunaDNA leverages what it believes to be best-in-class HIPAA compliant infrastructure in all processes including data storage and processing (even though we are not subject to HIPAA regulations).  Users decide how to share any and all information that is provided in the registry by customizing their privacy settings. Once a user has registered and created a profile then they can review and set these privacy settings using the appropriate activity on their dashboard. Health data and contact information are only ever accessed in accordance with a user’s privacy settings, and these privacy settings can be updated by the user at any time. 

Further information about the Luna DNA System and their policies can be found below:

Your involvement in the EDS and HSD Global Registry & Repository is critical to us being able to research for our future, working towards better information and diagnosis for all those with EDS and HSD.