YOU have the Power to Make a Difference in just 15 minutes!


YOU have the Power to Make a Difference in just 15 minutes!

Date: 13 Jun, 2019  No Comments

YOUR data is critical in the fight to make a real difference to the lives of all those affected by Alström Syndrome (AS)

YOU have the power to improve lives for the better by simply providing us with answers to some of the questions we have about infant health.

ASUK have created an infant questionnaire and your response will greatly strengthen the quality of the data we keep and will form part of a broader project we are embarking on to use data to:

  • Improve care
  • Increase understanding of the condition
  • Accelerate patient diagnosis.

In about 15 minutes YOU can make an incredibly valuable contribution to research, without ever leaving your home!
Read on to find out how YOU can make a difference TODAY!

DATA COLLECTION – WHY IS YOUR PARTICIPATION IMPORTANT?

Early diagnosis and better treatment
Information about AS health in infants will help Clinicians and Researchers recognise patterns in the occurrence of symptoms in particular ‘red flag’ signs that could inform an early diagnosis.

What does this actually mean for patients?
An early diagnosis of AS means patients can receive the right medication and treatment at the right time and share their experiences with others sooner. 

Diagnosis is complex, as very often infants do not present with the same set of symptoms –  AS can affect babies in different ways.

HOW YOU CAN HELP

 

 

Information is KEY. We know that the more information we can gather about Alström the more we can learn about the condition and improve its’ management and treatment.

 

You may be familiar with the little ‘Red Book’ that tracks your child’s health and developmental milestones, using this information and what you remember about your babies early years ASUK would like to start to document your child’s health information in a similar way, so that we can get a broad picture of how your baby progressed from birth through to their early years.

 

Working with Clinicians we have developed some questions that we hope will give Clinicians a greater understanding of infantile symptoms and when and how they appear.

 

If you’re willing to share some of your child’s early health information we would be very grateful if you could respond to the questionnaire that follows. It should only take around 15 minutes to fill in. We are happy to receive responses by post, email or over the telephone – whatever is easiest for you.

 

There are 16 questions in total, please complete each one as far as possible. Where there is a multiple-choice response please mark an ‘X’ in the box that is most applicable to your child.

 

You can download the questionnaire HERE

Please contact Liz if you need any assistance in completing this form on 07517 278946

Please email completed forms by the 26th July 2019 to liz.loughery@alstrom.org.uk
or post to Alström Syndrome UK, 4 St Kitts Close, Torquay TQ2 7GD

Thank you for taking the time to complete this survey,
you really are making a difference to families now and in the future.