Profile of Polish patients with primary progressive multiple sclerosis.

BACKGROUND: Epidemiologic data on primary progressive multiple sclerosis (PPMS) in Poland are limited. The aim of this study was to assess selected clinical and socio-demographic factors of Polish patients with PPMS and compare this form and relapsing-remitting (RRMS) and secondary progressive (SPMS) forms. METHODS: Patients who attended follow-up visits under the Registry of Patients with Multiple Sclerosis (RejSM) were enrolled in the study in the autumn of 2017. The prevalence of individual types of the disease was compared and the clinical, demographic, and social differences between RRMS, PPMS and SPMS were analyzed. RESULTS: Of the 8,045 registered patients, current data as on December 31, 2017 was obtained from 4,398 patients. The RRMS form was seen in 2,925 patients (66.5%); secondary progressive form, in 1.051 patients (23.9%); and PPMS, in 422 patients (9.6%). The first symptoms of PPMS appeared almost 10 years later than in patients with RRMS (39.2 ±â€¯11.4 vs. 29.8 ±â€¯9.8). The period from the first symptoms to diagnosis was more than twice as long in patients with PPMS (5.8 ±â€¯3.4) than RRMS (2.4 ±â€¯1.6). SPMS was diagnosed on average after 14 years of RRMS (46.2 ±â€¯13.5). The RRMS form was more frequently found in women (2.4:1), while the PPMS form was almost equal in both sexes (1.2:1). The average degree of disability based on the Expanded Disability Status Scale was 3.2 ±â€¯2.1 for RRMS, 4.6 ±â€¯2.4 for PPMS and 5.2 ±â€¯3.6 for SPMS. The dominant symptom in PPMS was paresis of the lower limbs (86%). Patients with PPMS had higher education and higher instance of marriage than those with RRMS or SPMS. CONCLUSIONS: PPMS occurs in about 10% of Polish patients with multiple sclerosis, and the first symptoms appear at around 40 years of age with the same frequency in both sexes. PPMS diagnosis takes more than twice the time for RRMS.

Attitudes of the autism community to early autism research.

Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of 'at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase 'at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.