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. This data is required to further advance research and assist in improving symptoms management of the disease.

How It Works

Kennedy's Contact provides health care or research organisations with their own unique secure system hosted on a secure server. This enables people to safely communicate highly confidential information to that organisation from anywhere in the world.

Our system provides your clinic or research organisation with an exclusive secure webform address. The information entered into your system is encrypted using your unique encryption keys and can only be decrypted by you.

Kennedy's Contact will email you when information is awaiting collection. Once you log in and retrieve the information, it is erased from our secure server. No data is stored within our systems after retrieval.

Customized Collection

Each organisation can author the specific types of information they require. You are provided with a dedicated username, password, and passphrase to ensure only authorized personnel can access sensitive details.

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 is usually between the ages of 20 and 40.

Early symptoms include tremors, muscle cramps, and fasciculations. Eventually, individuals develop limb weakness, often beginning in the pelvic or shoulder regions. Facial and tongue muscles may be affected later, leading to difficulty swallowing or slurred speech.

As an X-linked recessive disease, the patient's mother carries the defective gene. Daughters of patients are also carriers and have a 1 in 2 chance of having an affected son.

Research & Prognosis

Is there any treatment? Currently, there is no known cure. Treatment is symptomatic and supportive, including physical therapy and rehabilitation.

What is the prognosis? The disease is slowly progressive. Life span is usually normal, though mobility may become limited in later stages.

Will my details be safe? Yes. Kennedy's Contact deploys a unique system that ensures only the chosen organisation can collect the data intended for them.

More information will be available soon as we are launching a new website and streamlining systems.