Friday, April 4, 2014

Read this current study!

Online: www.RareDiseasesNetwork.org/porphyrias03/Apr/2014

Study Available!

Dear Amy Chapman
The Porphyria Consortium is pleased to let you know the Carolinas Medical Center & Healthcare System is now enrolling patients for our study:

Clinical Diagnosis of Acute Porphyria (7204)


About This Study

The porphyrias are a group of genetic diseases caused by disturbances in the formation of heme, an essential component of hemoglobin and other proteins, leading to either acute (neurologic) and/or chronic (cutaneous) symptoms.
Acute porphyria is often difficult to diagnose because symptoms may not be specific. Unless the patient is in an active attack, laboratory values typically may not be useful for diagnosing porphyria.
The purpose of this study is to test whether a focused questionnaire and laboratory evaluation tool can better define risk factors associated with possible genetic porphyria.

Can I Join this Study?

To read more about this study, see if you are eligible or find a clinical center near you, please visit our web site:
If you are already participating in this study, please disregard this email.
Do We Have Your Correct Information?
Stay Informed!
We want to keep you informed with the latest news and information. Keeping your contact information up to date can be done quickly and easily on the Web:
Click Here to Update Your Information
About the Porphyrias Consortium
The Porphyrias Consortium is a network of physician scientists, and clinical research resources dedicated to conducting clinical research in the Porphyrias. We Can Help You: Become aware of clinical research and clinical trial opportunities; Connect with expert doctors; Get help in managing your disease. 
Learn More >
The Porphyrias Consortium is a part of the National Institutes of Health's Rare Diseases Clinical Research Network. For more information, visit:www.RareDiseasesNetwork.org
The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate. Participation in research studies is voluntary. Deciding not to participate in a research study does not affect your ability to receive care at any of our Clinical Centers or from other physicians.
Rare Diseases Clinical Research Network
www.RareDiseasesNetwork.org
The Rare Diseases Clinical Research Network (RDCRN) was established by the National Institutes of Health (NIH) to develop research studies for rare diseases, and to encourage cooperative partnerships among researchers at over 150 clinical centers around the world. This increased cooperation may lead to discoveries that will help treat and perhaps prevent these rare diseases, as well as produce medical advances that will benefit the population in general. The Rare Diseases Clinical Research Network is comprised of a Data Management and Coordinating Center and 17 consortia studying over 100 rare diseases.
The Porphyrias Consortium is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the NIH Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS).
The National Institutes of Health does not endorse or recommend any commercial products, processes, or services. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

For more information please email me your name and phone to see if you qualify for this study Amy.APF@gmail.com


"Remember....Research is the key to your cure!"

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