Patient Registry


Patient Registry

Alström Syndrome UK in partnership with CoRDS are very excited to announce that the CoRDS Patient Registry will be going ‘live’ and enrolling patients in early 2020.

You hold a piece of the puzzle!

It is free and easy to complete and will build a worldwide picture about Alström Syndrome, improving our knowledge and understanding, which we hope will lead to an increase in interest from researchers globally.

Liz Loughery, the ASUK Project Manager launched the patient registry at the ASUK conference in October 2019, an interview with Liz is shown below and her presentation can be accessed here.

More information about the registry follows below along with Liz’s contact details if you have any questions.

 

What is the CoRDS Registry?

CoRDS stands for the Coordination of Rare Diseases at Sanford University. It is an American based registry which holds patient records for 7000 rare diseases.

Its aim is to connect patients and researchers to advance treatments for rare diseases.

The registry is free for participants and researchers to enrol. As part of this participants are required to provide information on their condition for researchers to access.

The database is secure and all information is protected, the information researchers receive does not identify the participant it only shares the information they have provided about their condition.

Registration and access is only authorised to people who have been diagnosed as having Alström Syndrome, Parents or Guardians or Legally Authorised Representatives.

How do I join the CoRDS Registry?

By choosing to participate in the CoRDS patient registry you will be sharing important pieces of your health story with researchers and clinicians around the world. In return CoRDS will alert you to research projects relevant to you.

What to expect:

  • Complete your screening form and receive log-in information
  • Review informed consent form
  • Answer 2 questionnaires (1 general questionnaire and 1 specific to Alström Syndrome). The questions will request your basic contact information, socio-demographic and health information, as well as your communication and research preferences
  • Expect to be contacted for potential research and clinical trial opportunities

Am I eligible to join the CoRDS Registry?

Registration and access is only authorised to:

  • People who have been diagnosed with Alström Syndrome
  • A parent or guardian of a child with Alström Syndrome who is under the age of 18
  • A Legally Authorized Representative (LAR) of an adult with Alström Syndrome over the age of 18.

Purpose of the CoRDS Registry

The purpose of the CoRDS Registry is to:

  • Develop and encourage the development of more research into Alström Syndrome
  • Facilitate research by collecting relevant data and making it available for specified research projects
  • Use the information provided to understand the disease better
  • Establish contact between clinicians, other health professionals and researchers
  • Enhance clinicians’ and other health professionals’ ability to deliver treatments for Alström Syndrome
  • Improve knowledge and understanding by providing robust patient led information, with the aim of future development of a global natural history study.

Why join the CoRDS Registry?

Joining the Registry will help advance research for Alström Syndrome which will benefit AS patients worldwide. By participating in CoRDS you may be contacted about research opportunities you qualify for, and can decide at that time if you would like to participate. CoRDS cannot guarantee that a researcher will request to contact you.

If you are enrolled, you will receive regular information about Registry activities and research advances in Alström Syndrome.

More facts about the CoRDS Registry

Participation in the CoRDS registry is voluntary. You are free to withdraw at any time, for any reason. To withdraw, you will need to contact CoRDS by email on cords@sanfordhealth.org and advise one of the following options:

  • Leave identifiable information in CoRDS, but do not contact me again;
  • Remove identifiable information and leave anonymised information in CoRDS;
  • Remove all information from CoRDS.

You will have 30 days to decide what you wish to do with your data. CoRDS will contact you to confirm that your data has been modified/deleted according to your wishes. If CoRDS does not hear from you within 30 days, your identifiable information will be removed and data will be stored in the registry indefinitely.

  • No one can find out if you (or your child) are in the CoRDS Registry, except for the purposes listed
  • No information will be given to insurance or related companies
  • Any decision whether to join the CoRDS Registry or to withdraw from it will not change your (or your child’s) medical care or legal rights
  • Your (or your child’s) personal details will not be shared with any authorised researcher, authorised health professional or any other third party without your consent. In most circumstances information will be anonymised
  • Any research that uses the CoRDS Registry must have sought permission by the participant and gained approval from the CoRDS Scientific Review Board.
  • If the information data for you (or your child) changes after registration you will have to update the responses you have provided on the CoRDS questionnaires.

How will my information be accessed? Can I choose how my information is shared?

On the questionnaire(s), you can choose how you would like CoRDS to share your information.

Information in CoRDS may be accessed in the following ways:

  1. Any access to the data in the Registry must be authorised by the both the participant and the CoRDS Scientific Review Committee. Access to your data by researchers will be anonymous, as you will be identified using an anonymous reference code. If a researcher needs to contact you personally regarding a research project, the CoRDS team will pass on this request to you. Your personal contact details will not be released to any researcher or any other third party without your consent.
  2. Information you have provided as part of the Alström Syndrome specific questions may be accessed by Alström Syndrome UK (ASUK) in order to enhance the existing data held and to increase knowledge and understanding of the condition. ASUK have signed an express condition of confidentiality to keep your information confidential.

Data ownership and control

Sanford University is regarded as the owner of the anonymised CoRDS patient registry data and all reports based on the patient registry data. Each Registry participant however owns his or her own personally identifiable health information in the Registry and may remove such information at any time.

You can also download an information leaflet which gives further information HERE

Contact

For more information about the CoRDS Patient Registry please contact the ASUK Project Manager, Liz Loughery on 07517 278 946 or email liz.loughery@alstrom.org.uk

Media Reviewed: January 2020
Next Review: January 2022