A Secure Way To Receive Highly Confidential Information. The Kennedy's Contact service provides a secure means for organisations involved in broad spectrum research on motor neuron diseases to securely receive contact details from those currently with Kennedy's Disease via the open internet. Concerns about confidential information security when using insecure email and other forms of communication have hindered organisations in their ability to collect vital patient data from outside their local area which is required to further advance research and assist in improving symptoms management of the disease. How It Works Kennedy's Contact can provide any health care or research organisation with their own unique secure system hosted on a secure server that will enable people to safely communicate highly confidential information to that organisation, no matter where they are located in the world. Our system will provide you, the clinic or research organisation, with a secure webform address to where people from anywhere can enter their highly confidential information for your use only. The information entered into your unique webform will be encrypted using your unique encryption system and can only be decrypted by you. Kennedys Contact will email you notifying you when information is awaiting collection. You then log in to the Kennedy's Contact login area area to retrieve the information. The confidential information is then decrypted and displayed ready to be printed. Upon closing down the retrieval area all that information is erased from our secure server. For those organisations that need to meet specific information security compliance requirements and are not permitted to receive highly confidential patient information via insecure email on the open internet, then the Kennedy's Contact service may be the perfect solution. Collect only the information you want. Each organisation has their own secure system and directory containing their webform and each organisation can author what type of information they require to be entered by the patient. The organisation is provided with a username, pass and passphrase which will enable that organisation to retrieve the sensitive details awaiting collection. Cost The service is available for a nominal yearly subscription fee of $33.00 incl GST (AUD). Please contact admin@kennedyscontact.net for further information. About Kennedy's Disease Kennedy's disease is an inherited motor neuron disease that affects males. It is one of a group of disorders called spinal muscular atrophy (SMA). Onset of the disease is usually between the ages of 20 and 40, although it has been diagnosed in men from their teens to their 70s. Early symptoms include tremor of the outstretched hands, muscle cramps with exertion, and fasciculations (fleeting muscle twitches visible under the skin). Eventually, individuals develop limb weakness which usually begins in the pelvic or shoulder regions. Weakness of the facial and tongue muscles may occur later in the course of the disease and often leads to dysphagia (difficulty in swallowing), dysarthria (slurring of speech), and recurrent aspiration pneumonia. Some individuals develop gynecomastia (excessive enlargement of male breasts) and low sperm count or infertility. Still others develop non-insulin-dependent diabetes mellitus. Kennedy's disease is an x-linked recessive disease, which means the patient's mother carries the defective gene on one of her X chromosomes. Daughters of patients with Kennedy's disease are also carriers and have a 1 in 2 chance of having a son affected with the disease. Parents with concerns about their children may wish to talk to a genetic counselor. Is there any treatment? Currently there is no known cure for Kennedy's disease. Treatment is symptomatic and supportive. Physical therapy and rehabilitation to slow muscle weakness and atrophy may prove helpful. What is the prognosis? Kennedy's disease is slowly progressive. Individuals tend to remain ambulatory until late in the disease, although some may be wheelchair-bound during later stages. The life span of individuals with Kennedy's disease is usually normal. What research is being done? There is a great deal if effort being afforded by organisations to broad spectrum of research on motor neuron diseases, such as Kennedy's disease. Much of this research is aimed at increasing scientific understanding of these diseases and, ultimately, finding ways to prevent, treat, and cure them. Will my confidential details be safe? Information security and confidentiality is critical when dealing with sensitive information. Therefore, Kennedy's Contact deploys a unique system that allows only the chosen organisation to collect the data that has been given to it by the interested party. For more information please contact: admin@kennedyscontact.net Informaton Web Sites: Kennedy's Disease Association, Inc Disability Online home > Kennedy's disease Diseases Database > Kennedy's disease