Every year, thousands of people struggle with mysterious ailments and cope with undiagnosed diseases. Recently, the National Institutes of Health (NIH) launched a groundbreaking program aimed to provide answers to patients with mysterious illnesses that have eluded diagnosis.
The program, called the Undiagnosed Diseases Program, focuses on the some of the most puzzling medical cases referred to the NIH Clinical Center by physicians across the nation. The program sees only three to four patients a week. Also, the NIH program brings together experts from various fields in medicine to examine patients at no cost.
According to the NIH, a small number of patients suffer from symptoms that do not correspond to known conditions, making their care and treatment extraordinarily difficult. The history of biomedical research and the careful study of baffling cases can provide new insights into the mechanisms of disease both rare and common.
Patients in the program are evaluated using the unique combination of scientific and medical expertise and resources at the NIH Clinical Center in Bethesda, Maryland. Two nurse practitioners manage patient recruitment and logistics which utilize existing facilities and staff at the NIH Clinical Center.
If you are interested in participating in the program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician’s assistant). Information specialists at the Clinical Centers Patient Recruitment Call Center (1-866-444-8806) can provide information about eligibility and what kinds of medical information referring physicians must submit for review by the programs medical team.
Information your physician must provide includes:
• A summary letter describing your condition, when it was first noted and your current health status
• A list of treatments and medications that have already been tried and their effects
• Copies of reports and results of pertinent diagnostic tests, along with X-rays, MRI results, and other imaging records/studies. Copies of the actual imaging studies are preferred.
Because of patient confidentiality considerations, no email submissions will be accepted. Your referring physician must mail the summary letter and related materials to: National Human Genome Research Institute, National Institutes of Health, Undiagnosed Diseases Program, 10 Center Drive - MSC 1851, Building 10, Room 10C103, Bethesda, Maryland 20892-1851
Undiagnosed Diseases Program staff will notify you by mail when the information from your physician has been received.
The programs medical team will review the information submitted for each case. Cases meeting the criteria will be presented to the Undiagnosed Diseases Programs board of specialists for further consideration. Patients who meet the program’s criteria will be asked to undergo additional evaluation during a visit to the NIH Clinical Center that may take up to a week.
For more information about the Undiagnosed Diseases Program, go to: http://rarediseases.info.nih.gov/Undiagnosed. Physicians and patients with specific inquiries may call the NIH Clinical Center clinical information research line, at 1-866-444-8806.
Sources:
http://rarediseases.info.nih.gov/
http://today.msnbc.msn.com/id/34845829/ns/today-today_health?GT1=43001
MC Ortega is the former publicist for the late Walter Payton and Coca-Cola. Ortega is a senior communications and messaging executive specializing in media relations, social media, program development and crisis communications. Also, Ortega is an avid traveler and international shopper. Ortega resides with her partner, Craig, dog, Fionne and extensive shoe collection. Ortega also enjoys jewelry design/production and flamenco dancing.