Do you have primary adrenal insufficiency - such as Addison’s disease or Congenital adrenal hyperplasia (CAH)? 

Please consider taking part in this research study looking at management of adrenal crisis.

This important research is led by Lisa Shepherd, Endocrinology Advanced Nurse Practitioner/HEE/NIHR Clinical Doctoral Research Fellow at University Hospitals Birmingham NHS Foundation Trust and ADSHG Medical Trustee.

The aim of this research, known as The VIStAA Study (Variations in Self-management of Acute Illness in Primary Adrenal Insufficiency) is to investigate behavioural differences of people who have experienced an adrenal crisis or prevented an adrenal crisis.

Chief Investigator, Lisa Shepherd tells us: "This is an exciting project which consists of four phases in total, and will lead to a co-designed (with patients and family) mobile health intervention to help prevent adrenal crisis.”

Who can take part:

  • People who have primary Addison’s disease
  • Are 18 years or older
  • People who administer their own steroid medication
  • People who have experienced an adrenal crisis
  • The study is open to residents in England, Scotland, Wales and Northern Ireland

What is involved:

  • You will receive weekly text messages for up to twelve months asking if you have been unwell and about your medication
  • You and your family/friend may be invited to participate in an interview to talk about factors around this event

The study is entirely voluntary and participants are free to withdraw at any time.

How to take part:

  • Contact the Chief Investigator, Lisa Shepherd
  • Please e-mail[email protected] to register your interest and Lisa will get in touch.
  • Or you can telephone on: 07796 175317

If you have any questions about this study, please contact Chief Investigator, Lisa Shepherd direct on: [email protected] 

Click here to download The VIStAA Study poster.

Thank you Lisa for researching further into this rare area of endocrine research for the benefit of those living with Addison’s and adrenal insufficiency.

FAQ's

Why is the study currently only able to recruit people with primary adrenal insufficiency?

As this is early stages of research and intervention development, patients with primary adrenal insufficiency were chosen as they usually have less comorbidities and require less hormone replacement than people who have secondary adrenal insufficiency (who may require additional replacement treatment in addition to glucocorticoid replacement). The plan is to further develop and test the intervention for all AI patients in the future. We can't do this without your support so please continue to support our research funding and raising awareness to help make this happen. 

The ADSHG receives regular approaches from researchers who are seeking our assistance with recruiting participants for their scientific projects. These approaches range from requests to publicise online questionnaires, to requests to assist with long-term clinical trials.  

Click here to more read more about our research application process

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