Swedish Motor Neuron Disease Quality Registry (Svenska ALS-registret)
Medical CenterKarolinska University Hospital, 171 76 Stockholm, Sweden, Stockholm, Sweden
Score by Dimension
Score breakdown
Services Breadth
3/5Number of service categories this organization offers.
- ✓1 service category listed
Advocacy Reach
How broadly this organization advocates and informs the ALS community.
- —Raises ALS awareness
- —Online information source
- —Publishes research / reports
- —International reach
- —Engages in policy / advocacy
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
5/5Percentage 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.)
Contact
Mission
National registry capturing ~85% of all Swedish ALS/MND patients; opt-out registry supporting clinical care collaboration and epidemiological research at national level. — ALS Registry, Research, Data Collection
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