Canadian Scleroderma Research Group

What Canadian Scleroderma Research Group does

The Canadian Scleroderma Research Group (CSRG) is a not-for-profit national research consortium founded in 2003 by Dr. Murray Baron and headquartered in Hamilton, Ontario. It coordinates multidisciplinary scleroderma research across 15 investigator sites spanning seven Canadian provinces, with prior international participation from Mexico City and ongoing data-sharing collaborations with Australian and Netherlands research groups. The consortium was formed specifically to address the rare-disease research challenge of insufficient patient numbers at any single site by aggregating longitudinal clinical data into a unified national platform.

The CSRG's core platform consists of a centralized patient registry and biobank containing detailed longitudinal clinical data on over 1,600 patients — approximately 15% of the Canadian scleroderma population — alongside serum, DNA, and tissue specimens. Surrounding products include a password-protected Healthcare Professional Portal with an expert-monitored question forum, CME video content delivered in partnership with CITE and pharmaceutical sponsors, the Maureen Worron-Sauvé Memorial Summer Student Research & Education Program, standardized CSRG 2.0 research forms, stem cell transplant clinical criteria, scientific publications, layman's article translations, and a relevant groups directory. A multidisciplinary team spans rheumatologists, cardiologists, pulmonologists, gastroenterologists, dermatologists, dentists, psychologists, and epidemiologists.

The consortium operates on a non-commercial revenue model composed of Canadian Institutes of Health Research (CIHR) grants, private donations, Scleroderma Canada and provincial patient organization support, and pharmaceutical company sponsorship for CME. Since inception, CSRG has received cumulative funding exceeding $4 million and produced 160+ peer-reviewed publications. Leadership transitioned in 2021 to Dr. Maggie Larché as Board Chair and Director, with Dr. Sabrina Hoa as Co-Director, Dr. Janet Pope as Vice Chair, Dr. Carter Thorne as Treasurer, and Stephanie Densmore-Farnworth as National Coordinator.

Name

Canadian Scleroderma Research Group

Legal name

Canadian Scleroderma Research Group

Website

https://canadiansclerodermaresearchgroup.org

Company type

Private

Founded year

2003

Operating status

Operating

Short description

The Canadian Scleroderma Research Group is a not-for-profit national research consortium founded in 2003 that coordinates a centralized patient registry, biobank, and education platform for systemic sclerosis research across 15 Canadian sites.

Ownership category

akta.pro rank

Product category

Clinical Research Services

NAICS

Business Associations (813910), Professional Organizations (813920)

SIC

Services-Membership Organizations (8600), Services-Medical Laboratories (8071)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Clinical research consortium
• Patient registry services
• Biobank specimen repository
• Continuing medical education
• Systemic sclerosis research

Headquarters

HQ city

Hamilton

HQ country

Canada

HQ region

North America

Offices12 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Technology or R&D, Operations, Marketing or Sales

Revenue model

1. Grant Funding: Primary funding from Canadian Institutes of Health Research (CIHR) grants. CSRG explicitly notes that institutional overhead and indirect costs are not eligible expenses under CSRG funding programs.
2. Private Donations: Individual patient donations support research activities
3. Pharmaceutical Industry Sponsorship: Several Canadian pharmaceutical companies provide funding and sponsor CME activities
4. Patient Organization Support: Scleroderma Canada and provincial scleroderma patient groups provide funding support

Go-to-market motion2 records

Distribution channels1 record

Marketing channels4 records

Core offering

The Canadian Scleroderma Research Group is a not-for-profit national research consortium that operates a centralized patient registry and biobank covering more than 1,600 systemic sclerosis patients across 15 Canadian sites. It delivers multidisciplinary scleroderma research infrastructure, a Healthcare Professional Portal with expert forums and educational resources, CME videos, standardized data collection forms, and a summer student training program, funded through CIHR grants, donations, and pharmaceutical sponsorships.

Product overview

The Canadian Scleroderma Research Group (CSRG) is a not-for-profit national research consortium that serves as the central infrastructure for scleroderma research in Canada. The CSRG operates a unified research platform built around a Centralized Patient Registry and Biobank containing longitudinal clinical data on 1,600+ patients across 15 sites nationwide. The platform includes specialized offerings: a Healthcare Professional Portal providing clinical resources and expert forums; CME Videos for continuing medical education; the Maureen Worron-Sauvé Memorial Summer Student Research & Education Program for trainee development; CSRG 2.0 Research Forms for standardized data collection; Stem Cell Transplant Criteria for treatment guidance; and Publications showcasing research outputs. Additional resources include Layman's Article Translations and a Relevant Groups Directory connecting patients with advocacy organizations. The CSRG connects multidisciplinary specialists (rheumatologists, cardiologists, pulmonologists, gastroenterologists, dermatologists) to perform high-impact scleroderma research.

Differentiator

Problem solved

Functional benefit

Products and services

• Centralized Patient Registry and Biobank A centralized clinical database and biobank containing detailed longitudinal clinical data on over 1,600 systemic sclerosis patients together with serum, DNA, and tissue specimens, used by researchers across 15 Canadian sites to study the disease.
• Healthcare Professional Portal A password-protected online portal for clinicians and allied health professionals treating systemic sclerosis, offering an expert-monitored question forum, a library of evidence-based resources and tools, and educational materials for professional development.
• CME Videos Continuing Medical Education videos on scleroderma treatment and research topics, presented in partnership with CITE (Canadian Institute for the Transfer of Knowledge) and pharmaceutical sponsors, covering topics such as mental health supports, pulmonary hypertension, GI involvement, and clinical management perspectives.
• Maureen Worron-Sauvé Memorial Summer Student Research & Education Program A summer student research and education program for trainees and early-career researchers, offered in partnership with CSRG, providing training opportunities in scleroderma research.
• CSRG 2.0 Research Forms Standardized research data collection forms used across CSRG sites for gathering clinical variables and patient data in the scleroderma registry.
• Stem Cell Transplant Criteria Clinical criteria and guidelines for stem cell transplantation in scleroderma patients, supporting physician treatment decision-making.

Quantifiable outcome

• 160+ scientific journal publications by 2021
• +2 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Five partnerships are on record, tiered core and minor.

• Scleroderma CanadacoreStrategic or Co-development PartnerNational patient organization partner providing funding support and patient engagement for research priority-setting and knowledge dissemination.
• Provincial Scleroderma Patient GroupscoreStrategic or Co-development PartnerAll provincial scleroderma patient groups provide funding support. Includes Scleroderma Society of Ontario and Sclérodermie Québec.
• Canadian Institute for the Transfer of Knowledge (CITE)coreStrategic or Co-development PartnerPartnership for CME video hosting and continuing medical education content delivery. CITE collaborates on educational initiatives between research and clinical practice.
• Scleroderma Clinical Trials Consortium (SCTC)coreStrategic or Co-development PartnerInternational consortium representing global clinical scleroderma researchers. Dr. Baron serves as president and executive member. CSRG has received international recognition through this membership.
• Australian and Netherlands Scleroderma Research GroupsminorStrategic or Co-development PartnerInternational data-sharing collaborations that increase patient numbers for studies of this rare disease.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Scleroderma Foundation: U.S. national patient organization funding and advocating for scleroderma research, education, and support. Comparable disease-specific nonprofit structure and patient-engagement mandate; functions as CSRG's natural U.S. counterpart for trans-border collaboration.
• EURORDIS - Rare Diseases Europe: European-level alliance representing rare disease patient organizations and supporting cross-disease registries/research infrastructure. Functions as a regional parallel to NORD and a model for federation-style rare disease data networks.
• National Organization for Rare Disorders (NORD): U.S. umbrella advocacy and research-funding body for rare diseases including scleroderma. Comparable nonprofit grantmaking, education, and patient-registry infrastructure operating at broader rare-disease scale.
• The Arthritis Society (Canada): Canada's principal arthritis and autoimmune disease charity that has recognized CSRG-affiliated research (Top 10 Breakthroughs 2019). Operates a national grant and patient-education portfolio that intersects with CSRG's registry and CME activities.

Others

• Canadian Institutes of Health Research (CIHR): Primary public research funder backing CSRG. Not a peer organization per se, but a critical ecosystem participant whose grant programs directly shape CSRG's research agenda, funding cycles, and collaboration footprint.

Regional players

• Federation of European Scleroderma Associations (FESCA): Umbrella of European national scleroderma patient associations analogous to Scleroderma Canada. Comparable patient-organization funding model and disease-advocacy remit across a different (European) geography.

Emerging players

• Pulmonary Hypertension Association: Disease-specific nonprofit that operates patient registries, CME, and research funding for pulmonary hypertension — a major comorbidity in scleroderma. Shares CSRG's model of registry-linked research and pharma-sponsored education.
• Myositis Association of America: Patient and research-focused nonprofit for inflammatory myopathies, another rare autoimmune disease with overlapping specialist engagement (rheumatologists, pulmonologists). Strong comparator for rare-disease registry-and-education models.
• Lupus Research Alliance: Disease-specific nonprofit research funder and patient cohort builder for lupus, a related autoimmune disease with shared registry/biomarker infrastructure needs. Adjacent but useful comparator for specialty autoimmune consortia.

Direct peers

• Scleroderma Clinical Trials Consortium (SCTC): International consortium of clinical scleroderma researchers in which CSRG's founder (Dr. Murray Baron) serves as president/executive member. Operates with an overlapping mission of advancing SSc clinical trials and shares investigators, governance norms, and grant pursuit with CSRG.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Canadian Scleroderma Research Group