A registry is a collection of standardized information about individuals that is focused around a specific diagnosis or condition. The information is provided on a voluntary basis either by a healthcare professional or the patients themselves.
Registries can answer gaps in knowledge about a specific condition or disease. A registry may contain personal, medical, social, and financial data. It’s designed to gather insights into the natural history and clinical aspects of a specific diagnosis or condition. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or a private company.
Other terms for registries include a clinical registry, clinical data registry, disease registry, or outcome registry, and but they are all interchangeable for the same registry.
How will this registry help the BCCNS patient community?
A registry is the cornerstone to research. Investigators working in a specific condition or disease will, at some point, need to have access to patient data to run experiments, discover new therapies, and achieve medical breakthroughs. Without a patient registry, the process of scientific discovery in medical treatments can be slowed, halted, or even dismissed. Participating in a registry is one of the most direct ways to participate in the future treatment and possible cures for your condition or disease.
Why should I participate in this registry?
Have you ever wished for a better treatment for BCCNS? Are you sometimes disappointed with how “slow” the research moves? By participating in the BCCNS Registry, you are helping fuel the research process. Investigators working within BCCNS will now have access to patient data they need to achieve medical breakthroughs. Better treatments are within reach, if you and the BCCNS community participate in the registry, we are one step closer to getting there.
How secure is the data and protected from hackers or other online threats?
BCCNS has contracted with the Genetic Alliance (www.geneticalliance.org), to manage, host, and maintain the registry. Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The software program being used is called the PEER platform. This same platform is being used by 40 other patient advocacy organizations, i.e., the Pancreatic Cancer Action Network, Celiac Disease Foundation and the Asthma and Allergy Foundation of America as well.
All data in the PEER system, the registry platform used by BCCNS Registry is encrypted when in transit and while at rest. Technology provider Private Access uses Secure Sockets Layer (SSL) encryption of the site, and nationally-recognized cloud services.
The production systems are hosted in the S3 Elastic Web service of the Amazon Web Services (AWS). Physical access to these data centers is strictly controlled both at the perimeter and at building ingress points by professional security staff utilizing video surveillance, intrusion detection systems, and other electronic means. For additional information about AWS’ security, see http://aws.amazon.com/security.
Private Access’ approach to security protocols has been to design, express, and enforce security as bounded architectural attributes, shared technical services, and redundant platform operations that occur as multiple occurrences throughout the service, both procedurally (user prompted) and systemically (automatically), and not merely as single points of occurrence (such as standard user name and password authentication and/or authorization techniques).
For those interested in learning more about PEER’s database structure and the way that researchers interact with the data stored there, this graphic provides a succinct summary.
Who will see and/or have access to the information?
When you begin to complete the registry questionnaire, you will be prompted to select your privacy and data sharing settings. You have the power to decide whether to share information just with BCCNS Life Support Network, or whether to share information with researchers, too. You also have the power to decide whether to just share health information, or whether to share you contact information, which would enable you to receive updates about research studies and trials in the future.
You also have the option to completely de-identify your entry into the database. Your contact information would not be shared with the BCCNS Life Support Network or investigators.
Please note, these settings are unique to each individual and their preferences, and can also be changed over time.
Will the BCCNS Life Support Network share my contact information with others?
No. Our policy states that no contact or participant information be distributed or shared with anyone, under any circumstances, unless permission is granted by the member.
Can I sign up on behalf of my child, who is a minor?
Yes, we encourage you to sign up for your child, if they are a minor. You will be prompted at the beginning of enrollment to indicate if you are the parent/guardian. Please note that a new registry questionnaire must be completed for each child individually. You cannot combine the information for multiple children at one time.
Will enrolling in the registry prevent myself or my child from getting health insurance?
No, it should not affect anyone from obtaining health insurance as the data is securely protected, will be de-identified when shared with researchers, and will not be distributed to third parties without the enrollees’ permission. It is completely private information.
Do I have to pay to be a part of the registry?
No, there is no charge for you to enroll in the registry.
Will this require travel?
No, there is no traveling required when you enroll in the registry. However, if you indicate you want to be contacted for future research studies, there may be some travel required but you can decide about that if, or when, you are informed about the study.
Ok, I joined the registry. What’s the next step?
First, thank you for enrolling in the registry. We ask that you help us in getting the word out about the registry. If there are members in your family with BCCNS, we hope you’ll encourage them to participate. You can also post about participating in the registry and the enrollment process in the BCCNS Facebook groups. Together as a community, we need to encourage all with BCCNS to participate. The more patients who enroll, the larger the pool of information is available for investigators to work with.
If I have done other registries for Gorlin and BCCNS, why do I have to do this one?
If you participated in another registry, specifically the registries at Stanford and CHORI, you will be receiving a letter in the mail for your consent to transfer your information into the BCCNS Registry. Please follow the directions on the letter to complete the process.
I’ve participated in some surveys about my BCCNS. What’s the difference between a survey and the registry?
A survey often concentrates on one study area. A researcher may be investigating one of the manifestations and creates a survey as a tool to address his hypothesis. The BCCNS Registry is a comprehensive tool that addresses the many manifestations of this syndrome. It is a universal resource to all investigators.
How long will it take me?
The registry is broken down into two sections. The first part only takes about 20 minutes to complete. The second half is a little more comprehensive and may take you 40-60 minutes to finish. You can complete the sections at different times and in multiple sittings, if needed. It is important for you to complete sections to help researchers have the most comprehensive set of data.
Why? Why is BCCNS LSN doing this? What is the purpose?
A registry is a transformational scientific endeavor as it is available to all researchers working in BCCNS. The BCCNS Registry will be the largest, most comprehensive database of patient information. It is the key to developing better treatments and one day, a cure.
Do I need to be diagnosed with BCCNS through genetic testing in order to participate?
No. You need to be diagnosed with BCCNS by a physician.
Who should I contact if I have any questions?
You can contact the BCCNS Network staff with your questions by e-mail (email@example.com) or by phone 267.689.6443.
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