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In the medical field, registries are systematic collections of data related to specific diseases, conditions, or treatments. They are databases designed to gather and store detailed information about patients' medical histories, diagnostic information, treatments, outcomes, and various other factors. The primary goal of medical registries is to advance medical research, improve patient care, and…
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Medical research is classified into primary and secondary research. There are three main types of primary research: basic (experimental), clinical, and epidemiological research. Secondary research provides a summary of available studies through reviews and meta-analyses.
Basic research
Basic or experimental medical research seeks to advance our understanding of the fundamental biological…
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The medical research process is a structured and methodical approach used to generate new knowledge and insights about various aspects of medicine and healthcare. It involves several stages, each aimed at addressing specific research questions, testing hypotheses, and contributing to advancements in medical science. Below are components of the typical medical research process:
Identifying…
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In this webinar, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.
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AAMDSIF is committed to operating with the highest level of accountability and transparency. Please click through to each category of policy for more information.
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Since 1983, the
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
and MDS International Foundation has…
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Clinical research
Clinical research:
A type of research that involves individual persons or a group of people. There are three types of clinical research. Patient-oriented research includes clinical trials which test how a drug, medical device, or treatment approach works in people. Epidemiology or behavioral studies look at the…
is at the heart of all medical advances, identifying new…
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The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.
Is it true to say that many people don’t realize that they are caregivers?
Yes, many say things like, “I’m not a caregiver; I’m his…
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Connecting with other patients and families can be a powerful and uplifting experience. Our networks let you learn from others, share your journey, get and give support and make new friends. You have the option of connecting on a one-to-one basis or with a group. You also choose the way you prefer to interact - by phone, in person or online.
Speak…
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Caregiver Stress
Don’t deny or ignore the fact that being a caregiver will have an effect on you.
The stress of caregiving can have a similar impact on the caregiver. “Be aware that being a committed caregiver carries with it physical and emotional health risks. There’s significant data that tells us the stress of being a caregiver can erode and adversely affect the immune system, placing…
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The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.
Is it true to say that many people don’t realize that they are caregivers?
Yes, many say things like, “I’m not a caregiver; I’m his…
Basic page last updated
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Intimacy
"Intimacy need not end with
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
disease.…
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Coping Emotionally with Bone Marrow Failure Disease
A disease diagnosis is unquestionably a difficult life event. Nevertheless, many patients develop a positive attitude about managing stress and undergoing treatment - and you can too. Your life may now have certain limitations, but it is within your power to learn the coping skills that will help you…
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Proper nutrition is important to optimize blood production and maintain general overall health. People with
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone…
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Why Exercise?
The many benefits of regular exercise have been known for years, and each year new research data supports this.
Apart from enhancing overall health and quality of life, exercise improves physical functioning of your body, improves efficiency of heart and lungs, strengthens and firms muscles, and reduces tension, anxiety and depression.
Daily activity is essential. Be active…
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What fatigue is (and isn’t)
Most patients who are diagnosed with a
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any…
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Dr. Caroline Piatek defined PNH, how PNH is diagnosed, the available treatment options, and side effect management. She also answered questions about PNH (Paroxysmal Nocturnal
Hemoglobinuria
Hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
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Sagar Patel, MD, Huntsman Cancer Institute, explains this post-transplant condition and its treatments. Watch to learn more about techniques used to prevent GVHD as well as short-term and long-term complications.
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Michael Pulsipher, MD, Primary Children's Hospital, explains the details of
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many…
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