Data that can change our world
BIG DATA - PATIENT REGISTER
More data, more insights
Alström UK has succeeded in building the first global patient registry. With a disease like Alström, with such low case numbers, this is an essential milestone in research into the disease.
In this case in particular, limits are not very helpful - only global thinking can lead to significant progress.
All information on this is available under the following link, the German translation can be read in the following section.
Answer questions
What is the Alström Register?
A patient registry enables you to provide your health information by completing questionnaires about your health in a safe and secure manner. The aim is to link this information with researchers and clinicians worldwide in order to learn more about Alström syndrome and to develop further treatments for this rare disease.
This means that knowledge is in the hands of the right people at the right time.
It's free to join for both you and professionals.
Researchers will only be able to see the information you provided about Alström syndrome. They cannot see your personal contact information or identify you.
Who can participate?
If you are over 18 and have been diagnosed with Alström Syndrome, you can join.
We also need you if you are the parent or legal guardian of a child with Alström syndrome who is under 18 years of age.
Why is the register important?
As you know, Alström is extremely rare so we need to pull together important pieces of your health information so that we can create a clearer picture of Alström. Researchers will be able to see this information but not be able to know who provided it.
We hope that researchers and clinicians from around the world will develop research projects to gain further insight into this rare condition.
The purpose of the register is:
Develop and promote further research
Gathering relevant information for specific research projects
Use the information provided to better understand Alström
Build a network between doctors, other health professionals and researchers
Better treatments and management for Alström syndrome
Improving knowledge and understanding around the world
Data and information security
When you fill out the questionnaires, you can choose how you want your information to be shared.
The information can be accessed in the following ways:
Any access to the information in the registry must be by both you and the CoRDS Scientific Review Board. to be agreed. Researcher access to your data will be anonymous so that no one can identify you. You will only be identified with an anonymous reference code. If a researcher wishes to contact you personally about a research project, the CoRDS team will contact you. Your personal contact details will not be passed on to researchers or third parties without your consent.
Information that you have provided about Alström Syndrome can be obtained from Alström Syndrome UK (ASUK) to improve the information that is available and to improve knowledge and understanding of the condition. ASUK will treat your data confidentially.
You have your personally identifiable information and can remove that information at any time. Sanford University owns the information that cannot be used to identify you.
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