Patient Registry


Patient Registry

How can we find out more about Alström Syndrome? 

You hold a piece of the puzzle! 

Help create the Alström Patient Registry.

This information will build a worldwide picture of Alström Syndrome, improving our global knowledge and understanding and leading to an increase in interest from researchers. You have the potential to make a real difference to everyone living with Alström now and in the future.

Liz Loughery, the ASUK Project Manager launched the patient registry at the ASUK conference in October 2019, hear from Liz in this short interview below. Her presentation from the day can be accessed here.

Alström Syndrome UK (ASUK) in partnership with Sanford University are delighted to announce that the CoRDS Patient Registry will be going ‘live’ in early 2020.

Take a few moments to read over the information below and get in touch if you have any further questions.

A Patient Registry enables you to provide your health information by completing questionnaires about your health in a safe and secure way. The aim is to link this information with researchers and clinicians worldwide to learn more about Alström Syndrome and develop further treatments into this rare condition.

This puts knowledge in the hands of the right people at the right time.

It is free to join for both you and professionals.

Researchers will only be able to see the information you have provided about Alström Syndrome. They won’t be able to see your personal contact information and won’t be able to identify you.

If you are aged over 18 and you have been diagnosed with Alström Syndrome, then you can join.

We need you to join too, if you are the parent or legal guardian of a child with Alström Syndrome who is under the age of 18.

As you know Alström is extremely rare, therefore we need to gather together important pieces of your health information so we can build a clearer picture of Alström. Researchers will be able to see this information but won’t be able to know who has provided it.

We hope by collecting this information, researchers and clinicians from around the world will develop research projects to discover further insights into this rare condition.

The purpose of the Registry is to:

  • Develop and encourage more research into Alström Syndrome
  • Collect relevant information for specific research projects
  • Use the information provided to understand Alström better
  • Establish a network between clinicians, other health professionals and researchers
  • Provide better treatments and management for Alström Syndrome
  • Improve knowledge and understanding globally
  • Complete your screening form and receive log-in information
  • Review the 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 such as age, gender and ethnicity and your health information
  • Answer questions about your communication and research preferences
  • Expect to be contacted for potential research and clinical trial opportunities

ASUK Project Manager, Liz Loughery or your Family Support Worker can assist you to complete the information. They can also support you if required on an annual basis to update your information.

When you complete the questionnaires, you can choose how you would like your information shared.

Information may be accessed in the following ways:

  1. Any access to the information in the Registry must be agreed by both you and the CoRDS Scientific Review Committee. Access to your data by researchers will be anonymous so no one can identify you. You will only be identified using an anonymous reference code. If a researcher needs to contact you personally regarding a research project, the CoRDS team will get in touch with 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 about Alström Syndrome may be accessed by Alström Syndrome UK (ASUK) in order to enhance the existing information and to increase knowledge and understanding of the condition. ASUK will keep your information confidential.

You own your personal, identifiable information and you may remove such information at any time. Sanford University is the owner of the information which can’t be identified to you.

Participation in the CoRDS registry is voluntary. You are free to withdraw at any time and 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 information. CoRDS will contact you to confirm that your information has been changed/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.

The full name of the Patient Registry is the CoRDS Patient Registry.

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

  • Any decision whether to join the CoRDS Registry or to withdraw from it will not change you (or your child’s) medical care or legal rights
  • You (or your child’s) personal details will not be shared with any researcher, health professional or any other third party without your consent. In most circumstances’ information will not be able to identify you
  • Any professional that uses the CoRDS Registry must have gained permission from both you and from the CoRDS Scientific Review Board
  • If the information for you (or your child) changes after registration you will have to update the responses, you have provided on the CoRDS questionnaires.

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

Firstly, you need to complete the CoRDS activation form, it is quick and easy to do, just follow the link below:

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

Simply add your:

  • Name
  • Date of birth
  • Your preferred language
  • Your diagnosis

Create log-in information

  • Your username is automatically generated
  • You can create your password
  • You can then select your security Q&A

You can then follow the link to log-in to your questionnaire:

https://cordsconnect.sanfordresearch.org/BayaPES/pp/participantLogin#

 

You can now answer the CoRDS enrolment questionnaire

You firstly need to add your:

  • Name
  • Date of birth
  • Gender
  • Ethnicity
  • Contact information
  • Who you are happy to share your information with.

Then you can answer specific questions, relating to Alstrom Syndrome

  • This incorporates 86 questions
  • Guidelines to help you complete the questionnaire can be found HERE

If you need any support or further information, please get in touch with the ASUK Project Manager, Liz Loughery on 07517 278 946 or email liz.loughery@alstrom.org.uk

Liz will be able to support you to register and complete the information.

Media Reviewed: March 2020
Next Review: March 2022