Can’t Get the Right Diagnosis? How to Get Help

Some people spend years trying to get an unusual combination of distressing symptoms diagnosed and  treated. They go from doctor to doctor, test to test, hoping that someone will somehow put two and two together and name their problem.

There is hope. The National Institutes of Health (NIH) launched a research program last September called the Undiagnosed Diseases Network (UDN). It’s based on a program established in 2008 which has put 750 patients through a week of imaging, genetic testing and other tests. Up to 50 percent of those patients were diagnosed through the program.

Top Specialists, Great Resources and Collaborative Analysis

The concept is simple: put a diverse, cooperative medical team in charge of using a broad range of diagnostic resources at top medical centers to diagnosis some of medicine’s most perplexing diseases. All the blood tests, imaging, genetic testing and other data are kept in a cloud-based, secure data-hosting system that physicians and researchers at all of the sites can access.

No Cost to Patients

The UDN is  free — patients aren’t charged for examinations or testing — but they must agree to have their data shared with NIH researchers.

UDN is available at seven medical centers: Baylor College of Medicine, Duke Medicine with Columbia University Medical Center, Harvard Teaching Hospitals, the NIH, Stanford Medical Center,  UCLA Medical Center, and Vanderbilt Medical Center.

Some people will have their medical mystery will be solved: a diagnosis will be found and a treatment plan developed. Others may get a diagnosis but the treatment will not be known. And unfortunately, others may leave without answers.

How to Apply

Ask your physician to send a referral letter that summarizes your medical issues and notes when symptoms were first noticed; lists any other diagnoses you have received; provides a summary of the results of your recent relevant evaluations, tests, medications and treatments; offers his or her thoughts  about what the diagnosis may be, and, if you are applying for a child, details any potentially relevant prenatal and birth history. The letter, with an electronic application, can be sent through the UDN’s website, undiagnosed.hms.harvard.edu/apply.

 

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About Barbara Bronson Gray, RN, MN

I'm an experienced healthcare and science editor and journalist. But most of all, I'm a registered nurse with many years of experience working in hospitals. I've learned what patients and families need first hand. But I've also worked to improve hospitals and educate people about their health. I'm committed to helping people take charge of their health care and get what they need from a complex and often discouraging healthcare system.
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