contribute to research: international patient registry

INTERNATIONAL PATIENT REGISTRY FOR CHIARI & SYRINGOMYELIA

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!

Have a specific question that you think should be studied in Chiari malformation, syringomyelia and related disorders? Email us!

OUR REGISTRY GOT AN OVERHAUL!

We have some exciting news— we recently relaunched our patient registry!

If you haven’t already, 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!

Why did we relaunch the registry?

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: kesposito@bobbyjonescsf.org.

What will my experience be like in the new registry?

The new registry makes it even easier for you to share your experience living with Chiari, syringomyelia or a related disorder. You can:

  • Answer surveys about your condition, your symptoms, and other issues (the pandemic, stress, sleep, etc.), but you’ll be using a new, much more user-friendly interface.
  • Link your electronic health records (EHR) using your patient portal logins to your registry account! This will benefit research and will also create a centralized location to view ALL your EHR in one place.
  • Safely contribute genetic data from places like 23andMe or Ancestry.com.
  • You can still share your data with researchers interested in helping answer questions that matter to you. But researchers will only be able to access your data after confirming their study is safe for patients via IRB. approval and your data will always be anonymized and cannot be removed from the system to ensure your data security is protected.
  • Choose to earn ownership shares in our partner company, LunaDNA! This is entirely optional. LunaDNA is owned by people who share their data (visit the LunaDNA Help Center for more information).
  • Gain access to up-to-date information about Chiari, syringomyelia and related disorders, curated by Bobby Jones CSF.

Bottom line: you control your data– no one else.

Who is LunaDNA?

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.

Why is Bobby Jones CSF choosing LunaDNA as the tech partner for this registry?

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.

How will be data be protected in the registry?

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.

Want more information?

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!

Even more detail is available on how your data will be protected in the new registry: review Luna’s updated Privacy Policy and Terms of Use documents.

What requirements are there for someone to access my data?

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.

How can I join the new registry (or re-activate my old registry account) and tell about my experiences with Chiari, syringomyelia and related disorders?

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:

  • Your data never leaves the platform.
  • You can delete your data or revoke your consent at any time.
  • Your personal information is never shared without your permission.
  • All research is scrutinized to protect individuals participating in research.
  • Our partner LunaDNA does not sell data for advertising, marketing, or any other purpose. And, if some other company attempted to buy LunaDNA, they would have to reconsent you and all of the people sharing in the platform, an impossible task!

How can I contribute to research on Chiari, syringomyelia and related disorders specifically?

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.).

What if I’ve already filled out surveys in the past in the previous registry system?

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:

  • How do people get Chiari?
  • How does a syrinx develop?
  • What other disorders are complicating the symptoms and treatment methods for those patients?
  • What is the best treatment for these disorders?
  • Is treatment even necessary?
  • It was once believed that under 20,000 people had these conditions… that number is now estimated over one million… so how many people are actually affected?

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.

WHAT MAKES THIS REGISTRY DIFFERENT?

  • Researchers get more robust data.
  • You have more control of your own data.
  • Constantly updating and protecting patients and families.
  • And we’re always here!

Sign up. Stand up. Be heard. BE THE KEY TO A CURE.

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.

GOT A QUESTION?

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 (kesposito@bobbyjonescsf.org).

 

Revised: 12/2020