Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders.

ABSTRACT:

Aim

To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe.

Methods

Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries.

Results

A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre

SUBMITTER: Iotova V 

PROVIDER: S-EPMC8016814 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature