The Irish Atopic Eczema Systemic Therapy Register (A-STAR)
Introduction
Research Area:
atopic dermatitis/ eczema/ registry
What is the research about?
A-STAR is an observational study seeking to assess the short and long-term safety and efficacy of therapies for people of all ages with atopic eczema or atopic dermatitis. We will also look at the ‘real life’ cost of treating eczema, examining how much these therapies cost, compared to how well they work. Once patients sign up to participate in A-STAR, we will follow their medical care via their local dermatologists. This is not a clinical trial, the data collected is only what is recorded as part of the patient’s usual clinic visits.
ASTAR is a NISR Solutions registry, The role of NISR is to collect and protect the data of consenting patients with specific dermatological conditions. Our registry participants deserve the best data management, governance and clinical expertise managing their data. With all of the related process held to the highest ethical, legal, scientific and clinical standards.
We are looking for an eczema patient or family member to represent the patient voice on our ASTAR Executive Committee. They will be part of a team who oversee the registry as it grows and helps guide how the patient data is used for research.
The overall aim is to advance research into eczema and help clinicians in their treatment decisions of patients.
Opportunity for:
Involvement Opportunity Details
Time
Time commitment:
A minimum of 4 meetings a year, all over Zoom each being about an hour.
Contact between meetings:
Emails, but rarely. Some word documents to review, rarely.
Length of involvement:
2 years
Start date for involvement:
08/09/2023
Logistics
Where?
If online, explain how:
Zoom and email
If in person, explain where:
Not applicable
Other ways of communicating:
We could also do phone calls
Funding available for:
If no funding available, explain why:
We are a charity funded organisation.
Other Information
Stage of the research study/ programme:
Research started
Is this opportunity for PPI in a PhD:
No
Closing date to contact researchers:
01/12/2023
Research Team
Contact person:
Lara Cutlar
University/organisation:
National and International Skin Registry Solutions CLG (NISR) is a not-for-profit organisation established in 2015 to build and maintain skin registries both in Ireland and Internationally.
Contact email:
l.cutlar@nisrsolutions.com
Researcher background:
Dermatology consultants, scientific researchers.
Research funder:
Photo:
Interested in this PPI Opportunity?
Please complete this form and click SUBMIT