title: Empowering patients and researchers through a common health information registry: a case example of adrenocortical carcinoma patients and researchers.
abstract: Adrenocortical Carcinoma is a rare malignant tumor that forms in the outer layer of tissue of the adrenal gland, which is a small gland situated on the anteriosuperior aspect of the kidneys. These glands produce steroid hormones, adrenaline, and noradrenaline that control heart rate, blood pressure, and other body functions. Because this cancer affects a limited number of patients, it is referred to as an Orphan disease, which is defined as a condition that affects fewer than 200,000 people nationwide. Internationally, there are 5,000-8,000 such diseases affecting an estimated 55 million people. There is often limited medical intervention for many of these conditions. With a small number of patients, and a correspondingly small number of providers and researches, this disease is a candidate for establishing a shareable information system that is used by the patient, provider, and researcher. This resource empowers the patient to support their care and treatment while allowing medical providers and researches to have valuable and broad access to patient activities and behaviors that may impact their treatment. Orphan disease registries are prime candidates for establishing health information resources that support communications between patients, providers, and researchers. As a resource, this information can be used to facilitate treatment protocols to include biomarker identification, testing and monitoring of new drugs. By empowering a common community of individuals that share a common disease, the potential to accelerate research and identify improved treatment options may also increase. This paper presents a strategic plan and design for implementing Orphan disease registries within an e-health environment that specifically links patients and providers with researchers. The Adrenocortical Carcinoma Registry will be used to demonstrate the implementation and potential of these systems.
authors: Scientific Technologies Corporation, 4400 E. Broadway, Suite 705, Tucson, Arizona 85711, USA. Deborah_Allwes@stchome.com
authors: Deborah
authors: D
authors: Allwes
authors: Michael L
authors: ML
authors: Popovich
mesh_terms: D000306:Adrenal Cortex Neoplasms; D018268:Adrenocortical Carcinoma; D006801:Humans; D020407:Internet; D008490:Medical Informatics / Q000458:organization & administration*; D019982:Organizational Case Studies; D010358:Patient Participation; D012042:Registries; D012108:Research Personnel; D014481:United States