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GRASS-UK

GRASS-UK

<p>GRASS-UK</p>

Who We Are?

The Global Registry of Alopecia areata disease Severity and treatment Safety- United Kingdom (GRASS-UK) is a prospective disease Register designed to study the safety and effectiveness of alopecia areata (AA) treatments in “real-world” NHS practice. GRASS-UK is part of a global collaboration (called GRASS-International) that will collect the same core dataset in each country involved, allowing pooling of data internationally to strengthen any findings.

The project has been set-up now because the treatment landscape for AA is changing rapidly, as highlighted by the recent approval of two new licenced Janus kinase inhibitor therapies for AA, along with several other small molecule and biologic therapy targets currently under development. However, with this expanding treatment armamentarium comes uncertainty, particularly around the long-term safety and effectiveness of these therapies and how they compare with currently available treatment options. This position is similar to the introduction of biologic therapies in psoriasis over 15 years ago, with history showing us the importance of long-term prospective data generated by BADBIR in informing treatment decision making.

GRASS-UK data will be available to analyse and interrogate for the purposes of dermatology research.

The pilot-phase of this project is funded by the British Skin Foundation (BSF) and the charity Alopecia UK. GRASS-UK is hosted at the University of Manchester and managed by the British Association of Dermatologists (BAD). Ongoing support will be through funding from pharmaceutical companies, but these companies will not be directly involved in the study activities and will not be represented on the Steering Committee.

What We Do

The pilot phase of GRASS-UK will run from January 2024-December 2024. We currently have 3 pilot sites for this stage of the project:

  • Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust
  • Mersey and West Lancashire NHS Trust
  • Royal Devon and Exeter NHS Foundation Trust

Phase 1 of the project will expand the study sites to UK centres that provide specialist hair loss services, with 15 sites identified. We also plan to introduce a linked bioresource collection during Phase 1 of the project. Phase 2 will then see the roll-out of GRASS-UK to any UK dermatology centre interested in being involved.

The activities of GRASS-UK are directed by the following committees:

  • The Steering Committee provides strategic oversight of the study
  • The Data Monitoring Committee will provide independent oversight of safety data collected
  • The Bioresource Committee will provide oversight of the collection, storage and use of biomaterials donated.

GRASS-UK will be on the NIHR research portfolio.

Sue Schilling CEO of Alopecia UK says; “At Alopecia UK we are delighted to see the GRASS UK registry progressing.  With the approval of the first licensed treatments for alopecia areata in the UK, and the increasing number of clinical trials for new innovative treatments we think we are at the start of a paradigm shift in the options available for people affected by alopecia areata.  As with other health conditions that already have a registry, we hope to see treatment effectiveness, patient responses and long-term outcomes tracked and monitored, hopefully leading to improved patient care as clinicians will better understand the disease and how to treat it.

It is especially encouraging that GRASS UK will collect data on the psychological and social effects demonstrating the impact of alopecia areata beyond the physical symptoms.  This is vital data will help the healthcare community understand how alopecia areata impacts quality of life, so that appropriate support strategies are developed for patients and funded appropriately in the NHS.

The bottom line is that without data it’s hard to convince anyone to invest in change.  We seed funded GRASS UK because we know that patients affected by alopecia areata need better care. Having a formal care pathway that works equitably across the UK would be a start and we hope that GRASS UK will help move us toward this basic ask.”

How To Get Involved

GRASS-UK is keen to receive expressions of interest from dermatology departments who would like to join. We encourage all BAD members and their departments to become involved.

For more information is available about the project and how you can get involved, please contact grassuk@manchester.ac.uk.

We encourage all pharmaceutical companies to join GRASS-UK. For more information, please contact shehnaz@bad.org.uk.

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