Sharon F. Terry

Credentials: CEO, Genetic Alliance and CEO, PXE InternationalBio: Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations.  Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research and services. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation.  She developed a diagnostic test and conducts clinical trials.  She is the author of 120 peer-reviewed papers, of which 30 are PXE clinical studies. Terry is also a co-founder of the Genetic Alliance Registry and Biobank.  In her focus at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations, including the Institute of Medicine (IOM) Science and Policy Board, the IOM Roundtable on Translating Genomic-Based Research for Health, the PubMed Central National Advisory Committee, the International Rare Disease Research Consortium Executive Committee and as Founding President of EspeRare Foundation. She is on the editorial boards of several journals. She was instrumental in the pas...
Source: PHRMA - Category: Pharmaceuticals Authors: Source Type: news

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Publication date: Available online 3 June 2020Source: Journal of the American College of RadiologyAuthor(s): Ruth C. Carlos, Katy Lowry, Gelareh Sadigh
Source: Journal of the American College of Radiology - Category: Radiology Source Type: research
Conclusion. The proposed nomogram obtained more precision prognostic prediction for patients with initially-diagnosed primary spinal and pelvic tumors. Level of Evidence: 3
Source: Spine - Category: Orthopaedics Tags: HEALTH SERVICES RESEARCH Source Type: research
Study Design.. A meta-analysis. Objective.. The goal of this study was to accurately evaluate the risk ratio (RR) of recurrence in chordoma patients with wide margin after removing the tumors using surgery, compared with inadequate margin (intralesional or marginal). Summary of Background Data.. As a rare malignant bone cancer, the more effective treatment for sacral chordoma is still surgical resection. However, there is no convincing evidence and risk ratio about sacral chordoma patients would be benefit from which kind of surgical margin. Methods.. We searched the PubMed, Cochrane Library, Web of Science, and...
Source: Spine - Category: Orthopaedics Tags: LITERATURE REVIEW Source Type: research
Conclusion. Patients with positive surgical margins benefit from adjuvant RT. Optimal OS is associated with adjuvant RT administered with advanced techniques and cumulative dose more than 65 Gy. Level of Evidence: 4
Source: Spine - Category: Orthopaedics Tags: SURGERY Source Type: research
Authors: Carkic J, Nikolic N, Nisevic J, Lazarevic M, Kuzmanovic-Pficer J, Jelovac D, Milasin J Abstract Oral carcinoma is the sixth most common malignancy worldwide, with survival rates of approximately 50%. The major type of oral cancer, present in 90% of the cases, is oral squamous cell carcinoma (OSCC). The genetic background predisposing an individual to OSCC is complex and largely unknown. Studies have suggested that endothelial nitric oxide synthase (eNOS) gene polymorphisms modulate the cancer risk, prompting us to assess the impact of three functional eNOS gene polymorphisms on OSCC risk. The present study...
Source: Journal of oral science - Category: Dentistry Tags: J Oral Sci Source Type: research
Purpose of review Genome instability has long been implicated as a primary causal factor in cancer and diseases of aging. The genome is constantly under attack from extrinsic and intrinsic damaging agents. Uracil misincorporation in DNA and its repair is an intrinsic factor resulting in genomic instability and DNA mutations. Additionally, the presence of uracil in DNA can modify gene expression by interfering with promoter binding and transcription inhibition or upregulation of apoptotic proteins. In immune cells, uracil in DNA drives beneficial genomic diversity for antigen-driven immunity. This review addresses disease...
Source: Current Opinion in Clinical Nutrition and Metabolic Care - Category: Nutrition Tags: GENES AND CELL METABOLISM: Edited by Anastasia Z. Kalea and Dorothy Klimis-Zacas Source Type: research
Conclusion: Both ESTD and ESD are safe and effective therapies for early-stage esophageal cancer wider than or equal to one half the esophageal circumference. The dissection speed of ESTD is faster than that of ESD.
Source: Journal of Clinical Gastroenterology - Category: Gastroenterology Tags: ALIMENTARY TRACT: Original Articles Source Type: research
CONCLUSION: A hybrid robotic transanal minimally invasive surgery approach allows for complete resection of very large polyps, which would otherwise be extremely challenging with standard transanal approaches. See Video at http://links.lww.com/DCR/B231.
Source: Diseases of the Colon and Rectum - Category: Gastroenterology Tags: Technical Note Source Type: research
No abstract available
Source: Diseases of the Colon and Rectum - Category: Gastroenterology Tags: Editorial Source Type: research
CONCLUSIONS: Nearly all people living with HIV and anal high-grade squamous intraepithelial lesions test positive for high-risk human papillomavirus on anal swabs; negative results may be due to sampling error, L1-based polymerase chain reaction assay, or human papillomavirus types not captured by standard clinical assays. Patients who have human papillomavirus 16-positive anal high-grade squamous intraepithelial lesions are indistinguishable from others based on demographic and clinical characteristics, underscoring the potential role of human papillomavirus testing for anal cancer screening. See Video Abstract at http:...
Source: Diseases of the Colon and Rectum - Category: Gastroenterology Tags: Original Contributions: Anal Neoplasia Source Type: research
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