A European Society of Endocrinology audit and multi-country comparison of Adult Growth Hormone Deficiency (AGHD) treatment in clinical practice in Europe, Australia and New Zealand; how closely are protocols and best practice recommendations followed?
We are pleased to announce a two-year pan-European Adult Growth Hormone Deficiency (AGHD) audit project which aims to collate AGHD patient data from participating centres and to analyse, at the local, national and European level, the best treatment practices now and in the future.
The AGHD Audit is commencing in June 2018, across 50 countries and will be led by Dr Susan Webb, MD, PhD, Sant Pau Hospital, Barcelona as the Principle Investigator.
The project aims, through collaboration with suitable participant(s), to assist in the optimisation of diagnosis and treatment approaches towards AGHD patients in local settings.
The project will enable a better understanding of AGHD patient care at a country perspective, as well as contributing to a cross-country analysis. The data obtained will allow us to identify opportunities and solutions to improve the current status quo in AGHD treatment.
ESE seeks your active participation if you satisfy one of the following criteria:
- You currently treat over 10 AGHD patients per year in your local setting, or
- You currently treat less than 10 AGHD patients per year due to local conditions not being sufficiently optimised to do so – for any reason.
The AGHD Audit is designed to capture 2016-2017 aggregated patient population data using a structured set of questions. You will be asked to collate the numeric data from your individual patient records, which the database will convert into a set of values across the sample, so that you can enter only those aggregated values into an e-form.
If you are unable to effectively treat AGHD patients currently, for any reason, your feedback is also very important - Almost 50% of questions in the e-form can be answered without a need to have any aggregated patient data, and this information will allow us to more effectively analyse the current situation. If this scenario applies to you, please register accordingly as a qualified pituitary expert.
The e-form is being used by all centres across Europe and will ensure:
- Your individual patient record data is kept confidential – ESE will receive only the aggregated patient data from the final e-submission form. Your internal database will not be accessed, except locally by you.
- Collecting aggregated data should mitigate any need for ethical committee approval of patient data being used this way.
- Aggregating the local sample data systematically, enables ESE to compare it to identical data captured from other centres around Europe.
ESE wish to capture all data by 1 November 2018, so they can generate an interim report of each participant centre findings, and then embark on collating and analysing the wider sample data into two publication submissions in late 2019. Your contribution will be acknowledged.
If you want to be involved in the AGHD Audit, please respond to the following:
- Can you or your colleague from the department or clinic, attend the AGHD project launch workshop at 16:45-17:45 on Sunday 20 May at the ECE 2018 venue in Barcelona, Spain? - This workshop will outline the project in more detail, enable your team members to meet the steering group, and ask any questions of the project team.
- If not, ESE would still like your team to engage in the project, either fully or in part at some stage over the next 6 months. If you would like to be involved, please register your interest.
To register your interest in the AGHD Audit, please complete the Pan-European Audit on Adult Growth Hormone Deficiency participant centre registration form - In order for us to appropriately prepare for the workshop meeting please provide this information as soon as possible and in advance of the congress.