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Genetic Disorders
Poland anomaly is an underdevelopment or absence of the chest muscle on one side of the body and webbing of the fingers of the hand on the same side.
… is complete. Reconstructive surgery can be helpful for the psychological development of teenagers, who are especially …
Event
On January 25, 2023, the National Human Genome Research Institute will hold a roundtable on social and behavioral genomics.
… J. Benjamin, et al.   Genomics, Behavior, and Social Outcomes by Daphne O. Martschenko and Lucas J. Matthews   Genomic Findings on Human Behavior and Social Outcomes by Daphne O. Martschenko and Lucas J. Matthews   …
Professional Development Programs
The JHU/NIH Genetic Counseling Training Program addresses the growing need for genetic counseling services.
… and social issues. Genetic information can have profound psychological meaning for clients, particularly for members …
FAQ
On November 8-9, 2023, NHGRI sponsored its 15th Genomic Medicine meeting, Genomic Medicine XV: Genomics and Population Screening, in Bethesda MD.  The following questions were answered during the meeting.
… disparities we see in renal disease and other adverse outcomes of hypertension. Given the large numbers of un- or … thinking, focus on patient-centered value and outcomes, and pay attention to equity concerns to ensure that … Ideally, they would track implementation and patient outcomes and publish the results; this has been a stumbling …
Event
On November 8-9, 2023, NHGRI sponsored its 15th Genomic Medicine meeting, Genomic Medicine XV: Genomics and Population Screening, in Bethesda MD.
… population screening, impact on clinical practice and outcomes, various genomic screening technologies and costs, … and available evidence of the impact of screening on outcomes and cost Identify research directions to inform …
News Release
Researchers have now identified three health conditions for which people with SCT are at increased risk.
… Findings from this first comprehensive review of clinical outcomes associated with SCT were published in the October … of Health. "We need more research to clarify the health outcomes associated with SCT and to understand the … failure or cardiomyopathy, stroke and pediatric growth outcomes. The study is notable for the limited number of …
File
… 2018 ISHGG Outcomes
Fact Sheet
Understanding gene therapy for sickle cell disease
MINC
Now that you’ve begun, you need to consider how to make it last. Consider sustainability and even expansion of your efforts.
… an outcome evaluation. Optimizing sustainability of outcomes of the progress made is essential to assure that the … resources was valuable leading to longer-term beneficial outcomes. … For example, genomic competency information has … need to be expanded?   Has it made a difference to patient outcomes so that ongoing commitment to continue this …
MINC
Evaluation of whether or not all your hard work is making a difference is important.
… change within an organization may include multiple desired outcomes. It is important at the beginning of the planning to …   When was the initiative completed?   What were the outcomes?   How In the process, you may have established …