Score by Dimension
Score breakdown
Services Breadth
3/5Number of service categories this organization offers.
- ✓1 service category listed
Research Activity
PubMed publications + ClinicalTrials.gov active trials linked to this organization.
- —0 PubMed publications
- —0 active clinical trials
Accessibility
5/5How easy it is for patients and families to reach this organization.
- ✓Has website
- ✓Has phone number
- ✓Has email
- —Has street address
- ✓Has map coordinates
Patient Support
Breadth of direct support offered to patients and families.
- —In-person support groups
- —Online support groups
- —Caregiver resources in services
- —Funds or provides home care
- —Children's resources
Data Completeness
4/5Percentage of profile fields with information.
- ✓Name
- ✓Type
- ✓Country
- ✓State / region
- —Address
- ✓Phone
- ✓Website
- ✓Mission
Network Connectivity
Connections to research consortia and ALS networks.
- —Part of a consortia
- —International reach
- —Publishes research
- —Maintains an ALS database
- —Mentions a known network (NEALS, ENCALS, TRICALS, etc.)
Community Rating
0/5No community reviews yet — this dimension is excluded from the overall score.
- —No reviews yet
Mission
Lead: Prof. Hannu Laaksovirta. National ALS reference center + national MND rare-disease register host. Lead: Dr Mari Auranen, PhD (Helsinki University Hospital) — co-leads the national MND-specific register project since 2018. Institution: HUS Helsingin yliopistollinen sairaala — Neurokeskus (Neurocenter). National MND register host — led from HUS + University of Helsinki neurology clinic for >10 years, formalized as Neurocenter Finland pilot from 2018 Focus on genetic motor neuron disease diagnosis and natural history tracking — enables clinical trial recruitment pathways for rare-disease MND patients Demanding neuromuscular diagnostics nationally centralized at Meilahti Epilepsy surgery nationally centralized (HUS + Kuopio) — Finland's only pediatric neurosurgery emergency service Neurosurgery: Europe's leading microneurosurgery center for cerebrovascular work; 3,000+ patients/year; hosts 100–200 visiting neurosurgeons per year for training
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