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Showing posts from January, 2017

Why Participate in Clinical Research?

Researcher Story: Why Participate in Clinical Research? NIH-supported ResearchMatch.org helps volunteers and researchers connect for clinical trials. Researchers and clinical trial participants explain what it's like to volunteer for a trial and how it promotes medical advances.

The Basics~ Clinical Trials

The Basicsstevecoleimages/iStock On this pageWhat are clinical trials and why do people participate?What is clinical research?Who participates in clinical trials?What do I need to know if I am thinking about participating?What questions should I ask if offered a clinical trial?How am I protected?What happens after a clinical trial is completed?How does the outcome of clinical research make a difference?
What are clinical trials and why do people participate?Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease. Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments. The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses. People participate in c…

Finding a Clinical Trial

Finding a Clinical Trial Around the Nation and Worldwideymgerman/iStock NIH conducts clinical research trials for many diseases and conditions, including cancerAlzheimer’s diseaseallergy and infectious diseases, and neurological disorders. To search for other diseases and conditions, you can visit ClinicalTrials.gov.ClinicalTrials.gov [ Tips for finding trials on ClinicalTrials.gov ]
This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. At the NIH Clinical Center in Bethesda, MarylandNIH Clinical CenterSearch NIH Clinical Research Studies
The NIH maintains an online database of clinical research studies taking place at its Clinical Center, which is located…

RSVP HERE https://www.eventbrite.com/e/patient-focused-drug-development-meeting-acute-porphyrias-registration-31068098519

We at the APF are getting very excited to see you all in Washington, D.C. in less than TWO MONTHS!  Many of you have already RSVPed directly to the APF... thank you!  In an effort to stay organized and efficient, we have created an event webpage for our FDA meeting.  Even if you have already RSVPed to us, please sign up through this website, too.  For those of you that have not RSVPed, in addition to signing up on this website, please still let Jessica at the APF know that you are planning to attend.  She can be reached by email atJessica@porphyriafoundation.org or by phone at the APF office at 866-APF-3635 or 713-266-9617.  We will keep you all up to date as the event approaches. 
Please do not hesitate to contact us if you have ANY questions surrounding this important event.
RSVP HEREhttps://www.eventbrite.com/e/patient-focused-drug-development-meeting-acute-porphyrias-registration-31068098519


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

Porphyria~ What are the porphyrias?

Porphyria What are porphyrias? Porphyrias are rare disorders that affect mainly the skin or nervous system and may cause abdominal pain. These disorders are usually inherited, meaning they are caused by abnormalities in genes passed from parents to children. When a person has a porphyria, cells fail to change body chemicals called porphyrins and porphyrin precursors into heme, the substance that gives blood its red color. The body makes heme mainly in the bone marrow and liver. Bone marrow is the soft, spongelike tissue inside the bones; it makes stem cells that develop into one of the three types of blood cells—red blood cells, white blood cells, and platelets. The process of making heme is called the heme biosynthetic pathway. One of eight enzymes controls each step of the process. The body has a problem making heme if any one of the enzymes is at a low level, also called a deficiency. Porphyrins and porphyrin precursors of heme then build up in the body and cause illness. What is …