The DICE EDS and HSD Global Registry
HELP PROGRESS RESEARCH, TREATMENT, & UNDERSTANDING
In order to continue to research for our future, we made the decision to move our Registry from the previous setting to the new REDCap platform hosted by The Ehlers-Danlos Society. In addition to security enhancements, the DICE EDS and HSD Global Registry has been re-organized and updated with new questions to provide enhanced quality and specificity for researchers.
DICE – DATA, INCLUSION, COLLABORATION, AND EXCELLENCE
The DICE EDS and HSD Global Registry is an important tool in collaborative research, which allows members of the EDS and HSD community to complete surveys and share medical information, to assist with research into the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The Registry will help researchers throughout the world to advance understanding of the EDS, HSD, and related symptoms and conditions, through use of the Registry data and by sharing new surveys for Registry members to participate in.
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 types 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.
The DICE Registry is accessible globally, and participation is free to all. You can sign up and access it via smartphone, tablet, or desktop device.
Your involvement in the EDS and HSD Global Registry is critical to us being able to research for our future, working towards better information and diagnosis for all those with EDS and HSD.
In order to continue to research for our future, we have launched the DICE EDS and HSD Global Registry and Repository. This platform will allow you to complete surveys in order to assist with research into the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
The registry is hosted on a secure REDCap system belonging to The Ehlers-Danlos Society, running on Amazon Web Services (AWS). REDCap is both GDPR and HIPAA compliant.
The Ehlers-Danlos Society is a partner in the REDCap consortium which is made up of almost 6,000 partners in 145 countries.
What is the purpose for the DICE EDS & HSD Global Registry?
The DICE EDS and HSD Global Registry will facilitate medical research for ALL types of EDS, HSD, and associated symptoms and comorbidities.
I was registered on the previous version of the EDS & HSD Global Registry. Do I need to re-register?
It is important that you register through the invitation link that applies to you.
If you registered in PEER
You are already in the DICE EDS and HSD Global Registry; however, the questions have been reorganized and updated to provide enhanced quality and specificity for researchers. To complete the new surveys, you should use the individualized link sent to you via email and NOT the public link you may see on social media and/or The Ehlers-Danlos Society website.
If you registered in LUNA DNA
Unfortunately, we do not have access to this data, and you will be required to re-register to participate in the DICE EDS and HSD Global Registry.
What materials do I need to complete the Registry surveys?
Additional resources are not required, but participants may find it helpful to reference their own medical history documents, notes, or symptom diaries when answering survey questions. Participants with a subtype that has a known genetic marker may be prompted to upload a copy of their genetic testing results within a survey. At this time, we are only accepting known disease-causing genetic markers, not variants of unknown significance. We recommend having a virtual copy of the results letter available on the device used to complete the survey.
How long will participation take?
There are four surveys that consist of questions about your demographics, health information, diagnosis, and symptoms related to your condition. Each survey can be completed at your own pace, but generally take ten to fifteen minutes to complete. All surveys are set up to save your progress as you go, and can be paused and resumed later.
What are you asking me to do?
You are being asked to answer online survey questions that will be used in research related to EDS, HSD and other related disorders.
After completing the surveys, you may occasionally receive invitations to participate in additional surveys or research activities. You are not required to participate, and you may simply ignore the invitation.
Researchers may want to contact you directly to participate in a study where personal communication is important. If a request is made for direct communication, The Ehlers-Danlos Society research staff will contact you to ask permission. You may accept or reject this request without any consequence to your current or future research participation.
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 type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) or suspect they may have one of these conditions. You may also complete the Registry on someone’s behalf; please see below for further information.
Are there any risks to me?
This survey has been approved by WCG Institutional Review Board and the risk to you is considered very low. Your decision on whether to participate will not affect your medical treatments or your relationship with The Ehlers-Danlos Society.
Can I participate in studies based on this data?
Users are encouraged to participate in studies when they meet eligibility requirements for that research study. Once you have joined the Registry, you will be contacted if there is an opportunity to participate in a study.
Can I access the surveys and data that I entered into the previous registry platforms?
If you created an account on the LunaDNA platform, you can still log in, access, and manage this information as you prefer. The data that is hosted on LunaDNA cannot be shared with anyone without your permission. The LunaDNA platform is no longer the host of the EDS and HSD Global Registry, and the information entered is not included in the DICE Global EDS/HSD Registry. Any requests relating to your data in the LunaDNA platform must be directed to LunaDNA; you can access their website here.
If you participated in PEER, you will have an opportunity to update some of your previously entered data in the DICE Registry. Since the DICE Registry replaces the PEER Registry, access to PEER surveys is closed.
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 type of registry is this?
The DICE EDS and HSD Global Registry uses a database platform called REDCap. You can find out more about REDCap here.
Where will my information and data be stored?
The EDS & HSD Global Registry and Repository data is stored on a secure REDCap research platform hosted by the Ehlers-Danlos Society. REDCap is both GDRP and HIPAA compliant running on Amazon Web Services (AWS) with servers located in the United States and Europe.
How is my data kept secure and private?
Your privacy and security are extremely important to us. We use best practices to protect your data and your confidentiality. Participants’ information is stored, transferred, and processed using GDRP and HIPAA-compliant privacy and state-of-art security measures. Your personal identifiable information is strictly managed, and all data provided to researchers is protected and de-identified unless explicit consent is given by you.
Our Registry data resides in a highly secure data system called REDCap, which is used by universities and research institutions around the world. All information obtained in the DICE EDS & HSD global Registry is strictly confidential unless disclosure is required by law. Please see The Ehlers-Danlos Society Data Protection Policy for more information.
If you have any questions or concerns about your data confidentiality, please contact The Ehlers-Danlos Society through our EDS & HSD Global Registry & Repository Contact Form.
Who has access to my data?
The Ehlers-Danlos Society research administrators are the only ones with access to your personal contact information. Researchers may apply for access to your data for further research, but they will only have access to de-identified information so that your personal identity is protected. If they require the data to be identified, you will be contacted to ask if you consent to that. No identified data will ever be shared unless you have given explicit consent.
Researchers may apply for access to your de-identified data for further research. If researchers require the data to be identified, you will be contacted with a request for consent. No identified data will ever be shared unless you have given explicit consent.
Can I access and update my data at any time?
After you complete a DICE Registry survey, the majority of your answers will not be able to be edited. If you wish to make an update (such as a change in name, contact information, or demographic information) you may send your request through the EDS & HSD Global Registry & Repository Contact Form.
Are there any benefits to The Ehlers-Danlos Society as a result of me taking part in this research?
The Ehlers-Danlos Society is an international non-profit organization dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers-Danlos syndromes and hypermobility spectrum disorder. Your participation in this study will help to further our commitment in these areas.
Will I get paid for being in the registry? Will it cost me anything?
There are no costs to you, or payments made for participating in this Registry.
Can I use the registry from my cell/mobile phone?
Our new Registry platform is mobile responsive and can be accessed from computers, tablets, and cell phones.
Can a relative complete the survey on my behalf?
Yes, if someone is unable to complete the survey or is under the age of 18 years, a relative or guardian can complete the survey on their behalf. In the survey, respondents will be asked if they are completing the survey for themself or for someone else. If it is for someone else, questions will appear where additional information can be included.
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 REDCap platform hosted by The Ehlers-Danlos Society. In addition to security enhancements, the DICE Global EDS/HSD Registry has been re-organized and updated with new questions to provide enhanced quality and specificity for researchers.
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. Your data will not be sold. To use Registry data for research purposes, researchers must apply and receive approval. Your participation in additional surveys and study activities will require separate consent. This consent is separate of the DICE Global Registry consent. If you are contacted for additional surveys or study participation, we encourage you to thoroughly review the consent and study materials for that research activity.
What if I want my data to be removed from the DICE Global Registry?
You have the right to refuse to participate or to withdraw at any time, without penalty. To submit a withdrawal request please contact us through the EDS & HSD Global Registry Withdrawal Request Form.
Withdrawal requests prevent your data from being used from the time of processing your request onwards. Data you provided prior to requesting your withdrawal may continue to be used with your identifying information removed, as removing it could compromise the integrity of the research project.
It is important to know that data you provided for additional surveys or research activities may not be included in the DICE Global Registry withdrawal. Withdrawal would need to follow the process that the additional survey/research activity described in its consent process. For questions about this process for surveys or studies outside of the DICE Global Registry, contact the research team or study coordinator of that research activity directly.
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?
We have designed the DICE Global Registry for individuals to complete without professional assistance, and to accomplish that the survey questions are designed to determine information as well as establish diagnostic certainty. After applying for specific approval, researchers are able to sort and filter de-identified Registry data and assess the information in context.
As a researcher, do I need IRB approval to share my survey via the Registry?
Any person submitting a survey must have up-to-date IRB/Ethical approval for their survey to be considered. Surveys without these approvals in place at the time of application will not be considered. Once your approval is in place, you may apply via the online form. After review, you will be contacted if your application is accepted.
My question isn't answered here. How can I find additional information?
Please contact us through the DICE EDS & HSD Global Registry Contact Form.
The DICE EDS & HSD Global Registry is fully GDPR and HIPAA compliant, maintaining secure infrastructure in all activities including data storage and processing.
Further information can be found in the privacy policies below.