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News for the fragile X community. Research, what findings mean for families, event highlights, and study announcements.

Electronic medical record

Data from electronic health records (EHRs) can help researchers learn more about conditions like fragile X. In turn, people with fragile X can benefit from research that uses their EHRs. But we need to balance benefits, such as developing better treatments, with protecting patients' privacy. This February, we'll invite hundreds of parents to take a survey about factors they might consider when deciding whether to let researchers use their child's EHRs for studies.

The Benefits and Risks of EHR Research

An electronic health record, or EHR, contains information about a person's health history. This may include family medical history, personal health conditions, and genetic test results. Doctors and other health professionals use EHRs to take care of patients. Now that most health records are electronic, researchers can more easily use them to study health conditions and treatments. And many people acknowledge that research using EHRs can lead to health care advances.

Studies have shown that patients are generally willing to let researchers use their health records if they have given permission beforehand [1]. But at the same time, some patients have concerns about the confidentiality of EHRs. Patients are concerned about information from their EHR being used for marketing, and about the ability of researchers to link health data to other information about them, such as income or education [2-3].

Patients with special health conditions like fragile X syndrome may be more likely to be asked to share their EHRs for research. This is because their EHRs may contain keys to understanding similarities and differences among people affected by fragile X. Although these patients may benefit the most from research use of EHRs, they may also need special protections. As researchers, we must balance the desire for more data to develop treatments with the protection of privacy for vulnerable groups of people [4-6].

Reaching out to Parents with a New Survey

We now want to ask a large number of parents how they feel about their child's EHR being used for research purposes. It is important for us to understand whether parents think the benefits of EHR research outweigh the risks. We also need to understand what information parents need in order to make an educated choice about letting their child's EHR be used for research.

In February, we will launch a survey through Our Fragile X World. What parents tell us will help researchers understand what parents need to know upfront before they agree to allow their child's EHR to be used in research. Later this spring, we will also be asking young adults with fragile X syndrome to take the survey.

Get Involved

If you are a parent of a child with fragile X syndrome and would like to take the survey, make sure you have enrolled in our registry. If you have moved or changed your email address since you first enrolled, please let us know.

Share Your Story

How do you feel about your child's EHR being used for research purposes? Please consider sharing your story with us. We hope to hear from you!

Sources Cited [1]  Robling et al., 2004. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study (PDF, 172 KB).
[2]  Perera et al., 2011. Views on health information sharing and privacy from primary care practices using electronic medical records.
[3]  Willison et al. 2009. Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions? (PDF, 382 KB)
[4]  Carman & Britten, 1995. Confidentiality of medical records: the patient's perspective (PDF, 867 KB).
[5]  Chhanabhai & Holt, 2007. Consumers Are Ready to Accept the Transition to Online and Electronic Records If They Can Be Assured of the Security Measures.
[6]  Willison et al., 2008. Access to medical records for research purposes: varying perceptions across research ethics boards.

About the Author

Sara Andrews

Sara Andrews is a research analyst at RTI International in the Center for Newborn Screening, Ethics, and Disability Studies. Her research focuses on the perspectives of individuals with disabilities and their families.