OpenApp develops European patient registry to support fight against rare disease Tay-Sachs


OpenApp, a leading provider of healthcare IT solutions, has developed a new patient registry to support the fight against Tay-Sachs and Sandhoff disease. This new registry is a joint initiative between The Cure & Action for Tay-Sachs (CATS) Foundation in the UK and "Acción y Cura para Tay-Sachs (ACTAYS)" in Spain, two organisations who support families affected by these rare diseases.

Tay Sachs and Sandoff disease are complex illnesses which affect a range of people. An individual diagnosed with either disease will suffer a relentless deterioration of mental and physical abilities and in its most common form called Infantile Tay-Sachs and Infantile Sandhoff, the symptoms commence around six months of age and result in death by the age of five.

“This registry will enable us to record in detail all those people affected by the diseases. It will also help us begin to build a deeper understanding of the prevalence of Tay-Sachs and Sandhoff disease in Europe and the onset of the different symptoms and the various different gene mutations of the diseases.” explained Daniel Lewi, Chairperson of CATS Foundation.

Both charities provide a support network, respite trips and vital equipment so that a sufferers quality of life is as high as possible. The CATS Foundation also provides funding to the research team who are investigating a potential treatment for both Tay-Sachs and Sandhoff disease.

“We needed a patient registry to bring together all the disparate information sources that we had. We chose OpenApp because they impressed us with their successful track record in creating patient registries. We tried EPIRARE100 from OpenApp. We knew that with a small amount of customisation, it would be ideal for us. We wanted to create a registry that works across borders with different patient centres and our new registry does that and more.” said Daniel Lewi.

Patient Registry Knowledge
OpenApp have a wealth of knowledge in developing Patient Registries for rare, chronic and acute diseases. Their already-successful patient centric eHealth registry product is currently in use in 26 countries all across Europe with the European Cystic Fibrosis Foundation as ECFSTracker. Their eHealth platform is web-enabled, provides role-based access and is interoperable with other systems.

“We were delighted to work with Daniel and his team. We work with larger patient groups, such as Cystic Fibrosis Europe so it is great to see our product make a difference with all sizes of patient groups.” said Mel McIntyre, MD of OpenApp.

McIntyre concluded “We're software developers who are in the business of improving healthcare. Patient registries do that. It's great to see patient groups, like CATS and ACTAYS who are using their data in the best possible way for the advancement of their rare disease and ultimately better patient care.”

About CATS Foundation
The CATS Foundation was established in June 2011 by Daniel and Patricia Lewi. Their daughter Amelie was diagnosed with Tay-Sachs at fifteen months of age in March 2011 and at the time there was no UK based charity dedicated to providing support for families affected by Tay-Sachs or Sandhoff disease. The CATS Foundation’s main focus is supporting families affected by Tay-Sachs and Sandhoff whilst also raising awareness of the diseases.

The charity provides a support network, respite trips and vital equipment so that a sufferers quality of life is as high as possible. The CATS Foundation also provides funding to the research team who are investigating a potential treatment for both Tay-Sachs and Sandhoff disease.

About Rare Diseases
A disease is officially considered rare when it affects fewer than 5 in 10,000 citizens. Between 6,000 and 7,000 different rare diseases have been identified to date; affecting more than 60 million people in Europe and the US alone.

Disease registries are considered by the European Commission as “an indispensable infrastructure tool for translating basic and clinical research into improved care and therapeutic solutions”.


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