Endocrine Abstracts

Background: The Swedish Pituitary Registry is a national quality registry founded in 1991 by the Swedish Pituitary Group.

A total of 89 such national quality registries exist in Sweden (2011) that provide important data in the continuous quality assessment and improvement work within the Swedish health care system.

In 2011, a nurse network was started for nurses working with the registry.

Purpose: The purpose of the Swedish Pituitary Registry is to guarantee that all patients with pituitary diseases get equivalent evaluation and treatment, as well as to evaluate given therapy.

Methods: Data from 3955 patients (1893 men/2062 women), median age 52 years (range 0–97), with pituitary diseases were registered 1991–2011.

Data registered in the registry consist of diagnosis, abnormal production of pituitary hormones, impact on vision, tumour extension and given treatment. Follow-ups were done after 1, 5 and 10 years. Since 2011 quality of life (EQ5D) and work ability are included.

Results: Among the pituitary tumours 1744 were non-functioning, 813 produced prolactin, 658 produced GH, 275 produced ACTH, 28 produced TSH and 15 produced FSH/LH.

102 patients had craniopharyngiomas and 320 had other pituitary diseases (including empty sella and Rathke’s cleft cyst).

The incidence 1991–2011 for the pituitary tumours overall was 19 cases/million/year. The incidence was 9.3 for non-functioning pituitary tumours, 4.3 for prolactinomas and for the most complete groups in the registry, GH and ACTH, the incidence was 3.5 and 1.5 respectively.

Most of the patients were treated with surgery, radiotherapy or medical treatment, alone or in combination.

Conclusion: The registry gives us possibilities to evaluate given treatments, and to get an indication if there are regional variations in the treatment results. It is also a unique source of acquired knowledge and gained experience for these unusual diseases.

Comments/keywords: Keywords: The Swedish Pituitary Registry, Pituitary diseases.