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I’m a researcher. How can I get access to the data in the FibroRegistry?

Please email us at contact@fibroregistry.org to request an application.

Do I have to be associated with an institution to get access?

Yes, you must be associated with an accredited scientific or medical institution that has an Institutional Review Board.

How is the FibroRegistry data different from the records of fibrolamellar patients my own institution might have?

There are several differences. One, the FibroRegistry contains data from patients at many different institutions, residing in many countries. It is also a longitudinal survey, collecting data over years of treatment. This makes our data set far broader than any single institution’s and, thus, potentially more useful in advancing research on fibrolamellar.

A second difference is that while our survey includes all the standard queries of typical hospital workups, it also includes a far broader series of topics. Specifically, it includes information particularly germane to understanding the origin, development and outcomes of fibrolamellar. It also asks about personal narratives, opinions about clinical trials, viral and environmental exposures, fertility issues, usage of complementary medicines, and more. Types of treatments and their outcomes are also detailed. The Fibrolamellar Registry contains physical uploads of patients’ blood test results and imaging scans.

What are the evaluation criteria for my proposal?

We accept applications from all researchers at all accredited scientific/medical institutions. The evaluation criteria include the following questions:

Will the proposed research benefit patients with fibrolamellar?

What important questions and problems will your research address?

For the complete application, please email us at contact@fibroregistry.org.

Who reviews the applications?

All applications will be reviewed by our Data Access Review Committee, which is comprised of doctors, researchers, and fibrolamellar patients and family members. All proposals will be kept confidential.

If my proposal is approved, how long does it take to get access?

Your access will be from immediate to up to six weeks, depending on what is being requested.

Is there a fee for viewing or downloading information from the FibroRegistry?

There is a nominal fee associated with preparing your data for access. Please email us at contact@fibroregistry.org for more information.

Can I see the patients’ names associated with their data?

Not unless they specifically allow you to do so.

Does having permission from a patient to look at their data in the FibroRegistry entitle me to obtain samples of their tissue stored in a commercial biobank or in the Fibrolamellar Tissue Repository?

The Fibrolamellar Registry collects only data, not tissue. Thus, we do not have the right to grant access to tissue.

However, patients who have sent biospecimens to the Fibrolamellar Tissue Repository or another biobank are asked the following question in our survey: “I allow my Fibrolamellar Registry survey data to be seen and used by researchers who have been approved to study my biospecimen(s).” The four answer choices are: no; allow this but keep the survey data anonymous; allow this and give researchers permission to initiate contact; ask first.

This means that if you, the researcher, have already been approved by an IRB and granted approval from the tissue-storing facility to study a patient’s biospecimens, and you now wish to access the related survey data for that patient, you may do so -- but only in the cases where that patient has answered the question with either of the “allow” options. In cases where the patient has chosen “ask first,” the system will notify the patient that a request has been made. The patient may decide to respond to your request or do nothing. If the patient has selected “no” as the answer to the question, you will be unable to view any FibroRegistry data linked to that patient’s biospecimen.

Can the Fibrolamellar Registry help recruit a cohort of study participants or patients for a clinical trial?

Yes. Our survey respondents are queried on their interest in participating in research or clinical trials. Please contact us at contact@fibroregistry.org for more information.

Will I be able to ask follow-up questions to survey participants or a subset of survey participants?

There are two possible ways to do this. One way is to query patients directly, if they have allowed direct contact. A second way is to develop your own follow-up survey with questions that we can then push to all participants or your chosen subset of participants.