Umeå University Hospital / University Hospital of Northern Sweden (NUS)

Number of service categories this organization offers.

• ✓1 service category listed

PubMed publications + ClinicalTrials.gov active trials linked to this organization.

• —0 PubMed publications
• —0 active clinical trials

How easy it is for patients and families to reach this organization.

• ✓Has website
• ✓Has phone number
• ✓Has email
• —Has street address
• ✓Has map coordinates

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

Percentage of profile fields with information.

• ✓Name
• ✓Type
• ✓Country
• ✓State / region
• —Address
• ✓Phone
• ✓Email
• ✓Website
• ✓Mission

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.)

No community reviews yet — this dimension is excluded from the overall score.

• —No reviews yet

Contact

Mission

National SOD1 ALS research anchor + regional ALS clinic. Lead: Prof. Peter M. Andersen, MD, PhD — Wallenberg Clinical Scholar, senior staff consultant neurologist. Institution: Norrlands universitetssjukhus (NUS) — Umeå University Hospital. Catchment: "Receives patients from throughout the Nordic region" — de facto Nordic SOD1 referral center Biobank: 14,000+ samples from ALS patients and family members since 1993 — one of the largest ALS biobanks globally Scientific legacy: Umeå-Harvard partnership launched SOD1 ALS research in 1993 when the first SOD1-ALS link was discovered; Umeå was the existing SOD experts when the ALS link emerged Tofersen (Biogen) breakthrough case: Umeå diagnosed a patient from southern Sweden with an aggressive SOD1 mutation in early spring 2020 (prognosis 1.5–2 years). Patient enrolled in Biogen phase 3 tofersen trial summer 2020 (infusions administered at Copenhagen University Hospital) and has dramatically exceeded expectation — the results catalyzed international coverage of SOD1-directed gene therapy. Peter Andersen and Karin Forsberg are the published clinicians ATLAS study (NCT04856982) — phase 3 evaluation of early tofersen in pre-symptomatic SOD1 carriers, ongoing since 2021, Umeå is a key recruiting site globally