Frequently Asked Questions About The Fibrolamellar Registry
What is a patient registry? A patient registry is a collection of information about patients who have a common disease. The information can include the results of a group survey, narratives about the patients' medical histories and even copies of their test results. Sometimes, all this data can be linked to actual physical tumor or blood samples they have donated to a tissue repository. The purpose is to aggregate data in order to find hidden trends and correlations, hopefully leading to earlier diagnoses, better treatments and, perhaps, a cure.
What kind of information will be collected? What information and how much information you want to store in the registry is up to you. The survey asks questions about demographics and general health, as well as fibrolamellar-specific questions around symptoms, diagnosis, treatments, clinical trials and more. You can also decide to upload test results.
Who will have access to my information? This is entirely up to you. When you register, you will have the option of keeping your information locked so that only you can access it. You can also decide to allow researchers addressing fibrolamellar -- whose work must be approved by their Institutional Review Board -- to either view and/or download your anonymous records and/or to contact you (or not) for further study. You can change any privacy option decision at any time.
How will my information be used? Researchers who have been approved by their Institutional Review Boards to study fibrolamellar and other cancers will be able to read, analyze and download your anonymous data, depending on what you allow. They will use this information to look for hidden trends and correlations in their quest to learn what causes fibrolamellar and how to diagnose it earlier. They will also use it to analzye the effectiveness of different treatment regimens in order to improve patient care. The FibroRegistry team will also collect and share data trends directly with the fibrolamellar community. The survey has been approved as a scientific study by the Genetic Alliance Institutional Review Board.
Can I make changes to my privacy settings or opt out after joining? Yes. You may do so at any time.
What happens if I want to be contacted for permission to export my data. Who would be notifying me? Do they go through the FibroRegistry or will they have my email address?If you want to be contacted first before allowing your anonymous, de-identified data to be examined or uploaded just select Ask Me. Any requests that come in to use the data are made to the Fibro Registry itself. If you've picked Ask Me, we then contact you. Even we may not know who you are (if you have made that privacy choice) but the system allows us to forward someone's request to you. They will never have your email address. We may or may not have it, depending on what you choose, but the system will.
If I hit the green "Allow" button, is all the data anonymous? It depends on what you choose under the “Get Contact” category of your settings.All survey data shared is always anonymous, but based on your “Get Contact” settings your contact information may be shared as well. Choosing “Deny” for this category means your contact information will not be shared: the only ID associated with your survey data will be 32-character numerical/alphabetical code (for example F8C9WBF1-524B-4961-B2EF-3F9A6F982C46) that is generated by our registry system. If you choose “Ask Me" as your option for this category and a researcher wants to contact you, their request goes through the registry system and your data is still anonymous – unless you choose to respond to the researcher request and share your contact information. If you do this, researchers will be able to view your contact information (but only once you have shared it). Finally, if you choose “Allow” for the “Get Contact” category, researchers will be able to see your contact information without first sending you a request through the system. Since you can assign different contact settings to different groups of researchers, and you can change these settings at any time, you have complete control over who can see your contact information and when.
Where will the registry's data be stored? The technology that runs the system is PEER, used by more than 45 organizations and communities who serve more than 60 conditions, and has over 15,000 individual participants. PEER has a number of databases associated with it, all managed on HIPAA compliant servers. All data is secured using enterprise-standard security and privacy systems developed by Private Access, a company with expertise in novel internet security platforms.
What is the difference between creating an account and creating a profile? An account is something you create for yourself. Once you have created your account, you will create a profile for a fibrolamellar fighter, who can be yourself, a spouse, a parent, or a child and for whom you will be completing the health data surveys.
Can I take the survey on behalf of a deceased patient? Yes, you may complete the survey on behalf of a late child, parent or spouse. Once you set up your account you are able to to set up a profile for your loved one and enter/upload as much information as you choose.
Can I create a profile and complete this survey on behalf of my sibling? Not directly. The only people you can complete a survey for are yourself, a spouse, a parent, or a child. This does not include a sibling. However, if a family member or friend who is not a spouse, parent, or child creates an account and profile for themselves first, they may then authorize you to assist them to complete the survey.
How can my sibling (or other relative or friend who is not a parent/spouse/child) authorize me to help them complete the survey? To do this, your sibling or other family member/friend needs to create their own account and profile. You can help them do this if desired. Next, have them click on the “Authorization” option in their new profile menu, as shown here.
TAKING THE SURVEY
How long will it take?People are reporting that the main survey takes about an hour. The treatment surveys that follow (and are found in your dashboard) take much less time!
What information should I have available before I start this survey? It would be helpful to have medical records nearby and/or access to a point of contact at the doctor’s office. You will need:
• Treatment information (dates, time frame, type, doctor/hospital)
• Pre-diagnosis symptoms, diagnosis details
• Blood & Rh type
• Progesterone use by mother
• Blood test results and imaging reports (soft copy for upload)
Can I take this survey from my cell phone? For a variety of reasons, we ask that you take the survey from a laptop or desktop computer only -- do not take the survey from a cell phone.
Can I stop midway through and return later? Definitely! We highly recommend you log out if you are stepping away for more than an hour or two.
Are there specific requirements to uploading blood test results or imaging reports? It would be very helpful if you upload each report separately, rather than all as a single upload. Also, we suggest you use a consistent naming convention for your uploads, such as “Blood_mmddyyyy” or “Imaging_mmddyyyy”, perhaps also including patient initials.
Please note there are no restrictions on the type of file you can upload. Also, there is a maximum storage capacity of 128 megabytes per upload.
I’ve started the survey; I’m finding it difficult to understand the flow.Here's the big picture:
• There is the initial The Fibrolamellar Registry (TFR) survey that is a one-time survey (though you can return at any time to make changes and edits).
• This TFR survey will trigger multiple other short surveys, specific to your responses, where details about specific treatments and the uploading of blood test results and imaging reports should be completed. These short surveys can be taken as many times as necessary to enter each and every treatment and to upload all blood test results and imaging reports.
• The Add New Treatment or Upload New Reports surveys will remain in your dashboard at all times to trigger a new treatment or upload survey as needed.
• There may be new surveys added in the future to address topics of interest to researchers.
• The survey is divided into topics
• Each topic has a series of questions
• Questions save and slide down the page
• New questions open at the top of the page
For each question:
• Select your response
• Scroll down to save
• Scroll up to proceed to the next question
How do I return to a question I skipped? If your survey is still in the process of being completed; you can scroll back through the topics & questions to find the question you want to edit. If you have already completed the survey; you can click on “My Data” from your dashboard and search/select the question/response you want to edit. From either location: When you edit and click SAVE; you will be presented with two options, to REVISIT ALL QUESTIONS or KEEP ANSWERS. It is very important that you understand what this means.
• Revisit All Questions assumes you want to re-restart your survey from the question where you are editing and re-answer all questions following the question you are editing. Clicking Revisit All Questions will delete ALL responses to ALL questions that follow the one you are editing. The advantage of this is that if your answer changes impact the questions that come after (for instance, if you say you’ve had surgery, you get questions about that surgery, and if you say you have not had surgery, you do not receive those questions), the survey will be updated to reflect your new response (for instance, if you accidentally said yes you had surgery, changing your answer to “no” on the surgery question would remove the irrelevant surgery questions). This is the best option for you to use if you are not going too far back when you change a response.
• Keep Answers will save your new response without removing irrelevant questions (though if your changed response triggers new questions, it may still bring these questions up for you to answer). It is the best option to user if you have already spent a lot of time on on questions appearing after the question you wish to update.
If you have already completed your survey, you can:
1) Click on My Data from your dashboard. Search for the question you skipped by searching the keyword “skipped” in the response column.
2) Click on the word “skipped”; this will bring you to the question in the survey that you had selected to skip.
3) Enter and save your response
4) If your response triggers follow-up questions, you will be directed to those questions to fill in a response.
5) Once completed, you will be directed to click “survey complete” and you will be returned to your dashboard.
I’m confused. I want to add my latest round of chemo. I see there is a chemo/immunotherapy survey on my dashboard, but there is also a survey called “Add New Treatment or Upload New Reports”. Which do I choose? If the relevant surveys already exist on your dashboard, you can go directly to those surveys to complete. If the relevant survey does not already exist, you should complete “Add New Treatment or Upload New Reports” to trigger the surveys to populate your dashboard. If you trigger a new survey when it already exists, it will cause a duplication of identical surveys.
How do I know when I’m finished with the survey or series of surveys? Your dashboard should give you an idea of where you are in relation to the series of surveys. In very general terms, if a survey is still pending or still needs to be initiated/completed, it will remain on your dashboard with a “resume” or “start” button. Some responses in the first survey may trigger new treatment-specific and upload surveys to appear on your dashboard for you to complete. When a survey has been completed, it will disappear from your dashboard, and be available to review in the “My Data” section of the registry. The only exception to this is the “Add New Survey or Upload New Report” survey, which allows you at any time to trigger a new instance of a treatment or reports upload survey, so you can continue to update your health data, indefinitely, with new treatment details and blood test results/imaging reports.
My survey has stalled. I've answered a question, but no new questions are displaying for me to answer. What should I do? Reloading the webpage (by clicking the circular arrow in the upper left corner of this page) will return you to the dashboard. You should "resume" your survey. It is possible you may have to re-enter responses for the last couple of questions just prior to the survey stall.
SEEING THE SURVEY RESULTS
I want to review all the answers I gave. How do I do that?You can view all the responses you provided by going into your account, clicking on "My Data" then Review/Edit, as shown in the image below. The survey won't try to update your information unless you try to edit a response.
I want to see everyone else's answers. How do I do that?While taking the survey, you will notice that the system informs you how others who have taken the survey already answered that question. This so-called "gamification" occurs as you travel through the survey and is available to view immediately, as soon as you enter your answer. Separately, once the registry has collected a statistically signficant number of participants, we will share the results of our and others' analyses as soon as possible. Factors involved in releasing these analyses include making sure the results are complete and accurate.