GENESIS: AN OBSERVATIONAL DIGITAL STUDY REPORTING GENERAL POPULATION NORMS FOR THE I-RODS, MMN-RODS, CAP-PRI & GO-QOL IN 6 COUNTRIES
Author(s)
Clémence Arvin-Berod, PharmD1, Glenn A. Phillips, PhD2, Nafthali Hananja Tollenaar, BSc3, Febe M. Brackx, Ir, MSc4, Sarah Dewilde, PhD3.
1argenx, Ghent, Belgium, 2Argenx, Boston, MA, USA, 3Services in Health Economics (SHE) BV, Brussels, Belgium, 4Analyst and Satistician, Services in Health Economics (SHE) BV, Brussels, Belgium.
1argenx, Ghent, Belgium, 2Argenx, Boston, MA, USA, 3Services in Health Economics (SHE) BV, Brussels, Belgium, 4Analyst and Satistician, Services in Health Economics (SHE) BV, Brussels, Belgium.
OBJECTIVES: Patient-reported outcome measures (PROMs) are essential for assessing quality of life and disease impact in rare autoimmune inflammatory diseases such as CIDP, MMN and TED. Commonly used disease-specific PROMs include the Inflammatory Rasch-Built Overall Disability Scale (I-RODS), Multifocal Motor Neuropathy Rasch-Built Overall Disability Scale (MMN-RODS), Chronic Acquired Polyneuropathy Patient-Reported Index (CAP-PRI), and Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire. Interpreting PROM scores is strengthened by comparisons with general population norms, which contextualize disease burden and quantify the extent of impairment. However, reference values for the generally healthy population for these instruments are currently lacking. The objective of this study was to establish general population reference values for PROMs relevant to autoimmune inflammatory diseases.
METHODS: GENESIS (GENEral population normS—An International Survey) is a cross-sectional digital study conducted in representative samples (n=21,000) from Germany, Italy, Japan, Spain, the United Kingdom, and the United States. Respondents completed the four PROMs. Norms were estimated using post-stratification weighting to align with population demographics.
RESULTS: Mean (SD) I-RODS and MMN-RODS scores were 85.0 (19.0) and 93.6 (13.0), respectively. On the I-RODS, “not possible to perform” was most frequently reported for running (17%), standing for prolonged periods (12%), and dancing (9%). On the MMN-RODS, the most common difficulties were reading (13%), cooking (13%), and making a bed (13%).
The mean (SD) CAP-PRI score was 5.5 (7.3); pain, frustration, and fatigue were reported as being experienced “a lot” by 12%, 12%, and 10% of respondents, respectively.
Mean (SD) GO-QOL total score was 87.3 (19.8), with 88.9 (19.5) for Visual Functioning and 85.8 (23.4) for Appearance. Cycling, appearance, and self-confidence were reported as being very much affected by 11%, 9%, and 9% of respondents, respectively.
CONCLUSIONS: These first general population norms for the I-RODS, MMN-RODS, CAP-PRI, and GO-QOL provide a critical benchmark for interpreting patient-reported outcomes in clinical and real-world settings.
METHODS: GENESIS (GENEral population normS—An International Survey) is a cross-sectional digital study conducted in representative samples (n=21,000) from Germany, Italy, Japan, Spain, the United Kingdom, and the United States. Respondents completed the four PROMs. Norms were estimated using post-stratification weighting to align with population demographics.
RESULTS: Mean (SD) I-RODS and MMN-RODS scores were 85.0 (19.0) and 93.6 (13.0), respectively. On the I-RODS, “not possible to perform” was most frequently reported for running (17%), standing for prolonged periods (12%), and dancing (9%). On the MMN-RODS, the most common difficulties were reading (13%), cooking (13%), and making a bed (13%).
The mean (SD) CAP-PRI score was 5.5 (7.3); pain, frustration, and fatigue were reported as being experienced “a lot” by 12%, 12%, and 10% of respondents, respectively.
Mean (SD) GO-QOL total score was 87.3 (19.8), with 88.9 (19.5) for Visual Functioning and 85.8 (23.4) for Appearance. Cycling, appearance, and self-confidence were reported as being very much affected by 11%, 9%, and 9% of respondents, respectively.
CONCLUSIONS: These first general population norms for the I-RODS, MMN-RODS, CAP-PRI, and GO-QOL provide a critical benchmark for interpreting patient-reported outcomes in clinical and real-world settings.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR204
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)