Friday, November 22, 2013

Research Studies Available! Can you or a family member Participate?

Online: www.RareDiseasesNetwork.org/porphyrias21/Nov/2013

Research Studies Available!


The Porphyrias Consortium is pleased to let you know we are enrolling patients in studies for the following diseases. To read more about each study, including eligibility criteria and who to contact, please follow the links below:

A confirmed diagnosis of a porphyria or have a relative who has been diagnosed with a porphyria

Longitudinal Study of the Porphyrias

Acute Intermittent, Porphyria Hereditary Coproporphyria, or Variegate Porphyria

Clinical Diagnosis of Acute Porphyria

Erythropoietic Protoporphyria (EPP)

Mitoferrin-1 Expression in Erythropoietic Protoporphyria
Measuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic Protoporphyria
Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact)

Porphyria cutanea tarda (PCT)

Hydroxychloroquine vs. phlebotomy for porphyria cutanea tarda
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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.
Department og Health and Human Services National Institutes of HealthOffice of Rare Diseases ResearchThe 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).NINDS
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.

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

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