Paroxysmal Nocturnal Hemoglobinuria (PNH)

In 2006 the Institute of Medicine issued a report recommending that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. In response to that report, many groups have now developed various types of "care plans" to help improve the quality of care of survivors as they move beyond their cancer treatment.  We realize that our organization represents three rare diseases, one of which is considered a cancer-- MDS. The survivorship care plan is applicable to all of our patients.  

Patient-centered care has become a central goal within the healthcare industry. Physicians are continuously working together with their patients in enhancing their relationship in order to make sure their patients are not only heard, but also feel comfortable with the care they are receiving. An example of an initiative that is meeting this criteria involves the emergence of Patient-Centered Medical Home (PCMH).

Health related quality of life (HRQoL) is a multi-dimensional concept that includes physical, mental, emotional, and social functioning. It goes beyond direct measures of health such as life expectancy, and causes of death; and focuses on the impact health status has on quality of life.  It is important to understand how this relates to “well-being”, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction.

In the last edition, “Understanding Research Articles Part I” explained the sections commonly found in research articles and explained further that reading a scientific paper is very different from reading an article in a newspaper or blog. The second part of this article provides you with tips to help you better understand how to read research articles. 

Here are a few suggestions for how to read/ the order to read a research article: 

We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH. These clinical trials (also known as research studies) were obtained from www.clinicaltrials.gov, the federal web site that presents information on clinical trials worldwide. To narrow down your search criteria, use the advanced search feature found on the home page.

The medical care we enjoy today is built upon decades  of effort by physicians, researchers, and other medical professionals investigating the causes of, and potential treatments for disease.

We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH.

What medical tests and exams happen before a stem cell transplant?

Your doctors will want to make sure you're healthy enough to have a stem cell transplant. They also will want to find out whether you have any medical problems that could cause complications after the transplant. You may have:

Blood Tests

Before a stem cell transplant, you might have blood tests to check for HIV, herpes, pregnancy, and other conditions. These tests help your doctors learn about your overall health.

Chest X-Ray and Lung Function Tests