We are always updating and improving our registry to focus more on things that matter to patients and their families. Check back often for the latest news about ongoing studies and news about new studies being proposed!
We have some exciting news— we recently relaunched our patient registry!
Take the first survey of 2021 here! We will be adding new surveys and launching new studies throughout the year with our scientific partners and with YOUR input. Keep an eye out for the ways we’d like to hear from you about what we still need to learn to make life easier for patients and families.
If you were already registered for the International Patient Registry before 2021, please be sure to set up your new username/password in LunaDNA! CONTACT KAITLYN to meet your new patient registry interface and learn more about the new features you’ll have to contribute to Chiari, syringomyelia and related disorder research!
To ensure that Chiari, syringomyelia and related disorder research does not become obsolete due to a lack of updating, we made the decision with our partners to move to an entirely new registry system which will help us prioritize patient control and maximize research potential!
The new registry system uses state-of-the-art technology, including privacy and security features that comply with (and exceed) all of the national and international requirements (e.g., HIPAA, GDPR, CCPA). Our partner for this is a company called LunaDNA, so you will see their logo on the screens you use to enter your information and connect your EHR. If you have questions about how to set up your account in the new registry, you can consult the LunaDNA Help Center.
For additional information you can always contact Kaitlyn Esposito: firstname.lastname@example.org.
The new registry makes it even easier for you to share your experience living with Chiari, syringomyelia or a related disorder. You can:
Bottom line: you control your data– no one else.
LunaDNA is a community-owned health research platform designed to improve human health. LunaDNA enables you to contribute DNA data, health surveys and medical records and gives you the option to earn ownership shares in LunaDNA in exchange for your data. The more information you share, the more shares you can own. For more information about LunaDNA visit their website.
LunaDNA gives you control of your data and enables you to share many different types of data with researchers, from DNA data and health surveys to medical records. Your data never leaves the system, so you can always see who has accessed your data. You can also see all of your data in one place, including your own medical records– no matter how many doctors and clinics you have visited! This is helpful even to manage health information for individuals affected by these and other disorders. There is more information about LunaDNA on their website.
You always maintain a “string” on your data.
Researchers cannot take your data out of the system, and you can always decide to stop sharing it. 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.
Your de-identified, shared data is combined with shared data from other participants in LunaDNA. Researchers only ever have access to this combined dataset and cannot see your shared data at an individual level.
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.
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All of these features and the oversight provided by the SEC (LunaDNA SEC filing), help to create a secure environment for your data. Security and privacy are of the utmost importance to us, and Luna is at the forefront of these fields!
All researchers apply to access de-identified data. They must submit proof of approval for research by an accredited Institutional Review Board (IRB) or ethics committee. All research must be shown to have a positive benefit for a community and/or individual.
Bobby Jones CSF will also weigh in on whether this research will actually benefit you or the people you love. The era of research being done to people is over—research is going to be done FOR you, instead.
Whether or not you are already a part of the Bobby Jones CSF International Patient Registry, you will need to register for an account on LunaDNA, confirm your email, and be given a code through your cell phone or Google voice number.
Next, you will be led through a consenting process and sign a consent form. You can review this consent agreement in detail here. In short:
Once you register with Bobby Jones CSF’s registry you will have access to the studies we have already approved. Depending on your account settings, we will also send you invitations to join new studies as they come out!
To start out, we want to hear from you about what is working and not working for you as you manage Chiari, syringomyelia and/or a related disorder in your life.
After completing the studies Bobby Jones CSF has included, you will also be encouraged to link all of your electronic health records, upload any genetic data you have, participate in a COVID-19 pandemic study, or participate in other general surveys (e.g., Personal Health History, Family Health History, etc.).
All the information you have already shared has been very important in getting to this point. Your survey responses has helped us plan research presentations, develop new research projects and select Q&A session topics that cater to patients and families. Your previous responses have also helped us refine our future questions and know exactly what the new registry system needed!
In the new LunaPEER registry, we will be focusing on collecting new data from you, but all the surveys you have already completed will be moved to your new account over the next year.
If you need to access your previous survey data for any reason, please contact Kaitlyn.
Chiari malformation (CM), syringomyelia (SM) and related disorders (RD) affect millions of people worldwide. Starting on the path to improved care can feel overwhelming.
Having an international patient registry will allow us to answer fundamental questions about the disorders that even the experts can’t really answer right now:
This registry will help us measure the effectiveness of health care programs and treatments. We’ll be able to see if the current treatments are working for patients– and if they are not, we can then advocate that those treatments to be improved. This might lead to less repeat surgeries, fewer hospitalizations and the development of new diagnostic and treatment options that can keep medical bills from skyrocketing. Improvements in treatment will not only keep costs down, but more and more patients will have better quality-of-life.
At the end of the day, good research into Chiari, syringomyelia and related disorders relies on YOU.
Your input matters.
You are the key we need to unlock the answers for the millions of families who struggle with Chiari malformation, syringomyelia and related disorders.
If you ever have a question about this registry or the studies that come out of it, you can always contact us and learn more. We always have at least one dedicated staff person able to answer your questions.
You can contact Kaitlyn, specifically, by phone (718-966-2593) or email (email@example.com).