Frontiers in Gynecological Endocrinology by Andrea R. Genazzani & Mark Brincat

Author:Andrea R. Genazzani & Mark Brincat
Language: eng
Format: epub
Publisher: Springer International Publishing, Cham

12.5 POI Registry

We urgently need to determine the scale of the POI problem, initially by the trawling of data from all clinics that manage women with POI. The data will undoubtedly demonstrate extreme variations in management and deficiencies will emerge. Armed with this information departments of health can then be petitioned to provide appropriate funding for the setting up of multidisciplinary units for the management of the particular psychological and physical needs of women with POI.

In the absence of prospective randomised controlled data, there is a need for high-quality observational data. There have been calls for a database/registry from our and other units to provide this information [18, 19].

Individual centres generally do not have sufficient exposure to women with POI to gather sufficient observational or RCT data to give meaningful results on disease characterisation and long-term outcomes. Cooper et al. make the point that fragmented research leads to fragmented patient care [19]. We are in total agreement that without definitive research, we are left to advise women with POI using inappropriate postmenopausal practice guidelines that are based on a different patient population.

The problems we need to overcome in setting up this database include a lack of established standards and design, quality of data, consistency of recruitment criteria, etc. Also, there has to be agreement as to the nature and quantity of the sample size required e.g. inclusion of women with iatrogenic POI as well as spontaneous. The collaborative effort of a cohort of international centres specialising in POI management can overcome many of these limitations.

It is vital that there is a sense of collective ownership of the data and any publications resulting from the research. We are currently in the process of data entry field modification through regular workshops with key collaborators to refine data capture fields and propose areas of data analysis and publication.

The potential benefits of such a database are many. It could be used to create not only an information database but also a global bio bank for genetic studies, with an ultimate goal of defining the specific pathogenic mechanisms involved in the development of POI e.g. unravelling the polygenic inheritance mechanism.

The database would have the potential to define and characterise the various presentations of POI along the lines of the STRAW + 10 Guidelines for natural menopause. The STRAW + 10 collaborators in their recent paper state that special groups, such as POI, warrant urgent attention for staging of reproductive aging [20]. It could also be used to further refine the role of biomarkers such as anti-Mullerian hormone to precisely predict the course and timing of natural and early ovarian insufficiency [7–9].

There is a desperate need to determine long-term response to interventions such as the contraceptive pill, hormone therapy and those not receiving treatment. This is particularly important in women with rare causes and hormone-sensitive cancers where randomised trials are unlikely to be ever performed.

Regarding treatment, questions which urgently need to be answered include, does the type of HRT matter, body identical versus other types of HRT, oral versus transdermal

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