Please post using a written summary and an attached professional PowerPoint presentation, narrated with your own voice recording ( I will add the voice recording to the power point once it’s complete). Include the following information:
Brief introduction to the problem to include its novelty and significance.
List and drawing of the concepts (independent and dependent variables) of the conceptual framework.
Summary of the concept (variable) relationships.
Clear hypotheses you will test in your study.
Summary of proposed methods to include sampling, and analysis; display organized with subheadings.
Justification of the feasibility of proposed research.
Expected outcomes.
Please read below for subject:
The Study Topic: The survival rate of Adrenoleukodystrophy patients with known family history and foreknowledge of the disorder
Background and Rationale: Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function. Without the myelin sheath, the nerves can no longer relay information to and from the brain.
One in every 21,000 males are born with ALD. If not treated, affected boys experience learning and behavioral problems that usually begin between the ages of 4 and 10. Over time the symptoms can worsen, and these children may have difficulty reading, writing, understanding speech, and comprehending written material. Additional signs and symptoms of the cerebral form include aggressive behavior, vision problems, difficulty swallowing, poor coordination, and impaired adrenal gland function. The rate at which this disorder progresses is variable but can be extremely rapid, often leading to total disability within a few years. The life expectancy of individuals with this type depends on whether early diagnosis and treatment are available. Without treatment, individuals with the cerebral form of X-linked adrenoleukodystrophy usually survive only a few years after symptoms begin.
The Study Aim: The primary objective of this research is to analyze the relationship between survival rates of early detection of ALD and on going treatment for continuity of care. Determine whether early detection has a better odd of living longer with a genetic medical condition.
The Research Questions:
Is there a significant association between early detection and survival rate of Adrenoleukodystrophy (ALD)?
Is there a significant association between dietary changes and life expectancy of ALD?
Is there a significant association between continuity of care and management of ALD ?
The Population and Data: The research populace will be 10 boys with cerebral X-ALD referred to the University of Minnesota Amplatz Children’s Hospital for possible treatment with bone marrow transplant. The research will show if patients had early detection or late detection of ALD. All bone marrow-related data will be obtained from the University of Minnesota Pediatric Blood and Marrow Transplantation Database via medical personnel.
References:
U.S. National Library of Medicine. (2021, June 10). X-linked adrenoleukodystrophy: MedlinePlus Genetics. MedlinePlus. https://medlineplus.gov/genetics/condition/x-linked-adrenoleukodystrophy/#resources.
Polgreen, L. E., Chahla, S., Miller, W., Rothman, S., Tolar, J., Kivisto, T., Nascene, D., Orchard, P. J., & Petryk, A. (2011, August). Early diagnosis of cerebral X-linked adrenoleukodystrophy in boys with Addison’s disease improves survival and neurological outcomes. European journal of pediatrics. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3101278/.
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