National and International Skin Registry Solutions CLG (NISR) is seeking an Atopic Dermatitis/Eczema patient and an Alopecia Areata patient to join the Executive Committees of two new skin registries for people living with these conditions.
What is a NISR?
NISR is a not-for-profit organisation which builds and maintains skin registries, both in Ireland and Internationally.
What is a NISR skin registry?
NISR registries are longitudinal observational studies of dermatological conditions. NISR is currently managing 5 registries, the Irish Epidermolysis Bullosa Registry, the Irish arm of the UK-Irish Atopic Eczema Systemic Therapy Registry (A-STAR), an Alopecia Areata registry (GRASS) and two Coronavirus specific registries for Alopecia and Atopic Dermatitis.
How can I become involved as a patient advocate?
NISR has two new registries which are now enrolling patients across Ireland. They are seeking an Atopic Dermatitis/Eczema patient and also an Alopecia Areata patient to join the Executive Committees of each registry. As a committee member, you will have the opportunity to provide input and advice on the delivery of registry data and ensure the voice of patients is heard throughout the life of the registry. NISR is looking for patients who are generally knowledgeable about healthcare, the patient experience and interested in research. A professional background in healthcare or research is not essential.
Related: Learn more about NISR Skin Registries
Related: ISF Partner of SECURE-AD Patient Registry*
Related: “Eczema makes you feel you always have to hide yourself. It has really affected me emotionally”
About the UK-Irish Atopic Dermatitis/Eczema Systemic Therapy Register (A-STAR)*
A-STAR is an longitudinal observational study seeking to assess the short and long-term safety and efficacy of systemic immuno-modulators for people of all ages with Atopic Eczema or Atopic Dermatitis (AD). A-STAR will also look at the ‘real life’ cost of treating eczema, examining how much these therapies cost, compared to how well they work.
The overall aim is to help clinicians in their treatment decisions of patients with atopic eczema and through this to improve patient care.
The position requires a diagnosis of eczema and a commitment to a collaborative and inclusive working environment. Parents or guardians of people with eczema are also invited to apply.
If you have eczema and are interested in this challenging and rewarding opportunity, please send your CV and/or a short cover letter detailing your background to: firstname.lastname@example.org, by the 28th of February 2023.
About the Global Registry of Alopecia areata disease Severity and treatment Safety (GRASS)*
GRASS is a disease registry study that records, stores and analyses relevant data about the health and medical treatment of people living with Alopecia Areata (AA). It is a member of a developing global network of connected AA patient registries called GRASS-International. This group formed after an extensive international project that included patient organisations, expert physicians, scientists and regulatory and industry representatives.
The position requires a diagnosis of alopecia and a commitment to a collaborative and inclusive working environment. Parents or guardians of people with alopecia areata are also invited to apply.
If you have Alopecia Areata and are interested in this opportunity, please send your CV and/or a short cover letter detailing your background to: email@example.com, by the 28th of February 2023.
*NB: All committee members will have an understanding of the ethical and policy requirements of this registry and will be part of a team responsible for monitoring, reviewing and assessing research applications. Research applications will be submitted by Academic and Industry/Pharmaceutical groups. The committee members will be expected to maintain confidentiality and act with integrity, in accordance with the charity’s policies and procedures, all of which will be explained in advance, in full by NISR Solutions CLG to the patient representative as required. The candidate will also be required to provide feedback to the Executive Committee on any concerns or conflicts of interest they may have.
The successful candidate will be expected to attend online evening meetings 4 times a year and to be available to review research applications as and when required.
NISR are an equal opportunity organization and welcome diversity in our committee. There is no financial reimbursement for participation.
If you need guidance or support about managing a skin disorder, contact the ISF Helpline for free assistance and information.