{ "data": { "asOf": "2026-10-30T22:25:25.706Z", "dedupMethod": "exact cross-registry identifier matching; probabilistic = review only", "byRegistry": { "clinicaltrials_gov": 1 }, "canonicalTrial": { "canonicalId": "NCT00055055", "title": "Study of Families With Twins or Siblings Discordant for Rheumatic Disorders", "scientificTitle": "Pathogenic Studies In Families With Twins Or Siblings Discordant For Systemic Rheumatic Disorders", "status": "completed", "studyType": "observational", "phase": [], "conditions": [ "Rheumatoid Arthritis", "Systemic Lupus Erythematosus", "Idiopathic Inflammatory Myopathies" ], "interventions": [], "sponsor": { "name": "National Institute of Environmental Health Sciences (NIEHS)", "type": "NIH" }, "locations": [ { "city": "Bethesda", "country": "United States", "facility": "National Institutes of Health Clinical Center" }, { "city": "Research Triangle Park", "country": "United States", "facility": "NIEHS Clinical Research Unit (CRU)" }, { "city": "Madison", "country": "United States", "facility": "University of Wisconsin" } ], "outcomes": { "other": [], "primary": [ "Physician Global Assesment Questionnaire" ], "secondary": [] }, "eligibility": { "sex": "ALL", "criteria": "* INCLUSION CRITERIA:\n\nThe minimum inclusion criteria needed for enrollment are a twin pair or sibling pair, as defined by an eligible proband and his/her eligible twin or sibling, willing and able to give informed consent, to enroll in the study, to complete the questionnaires and to donate blood and urine samples (in case of children, parent/legal guardian must also be willing and able to provide informed consent).\n\nProband inclusion criteria:\n\n\\- Children (\\< 18 years of age) or adults (18 or more years of age) require a diagnosis of a systemic rheumatic disorder (by American College of Rheumatology (ACR) or other criteria for the adult or juvenile forms of RA, SLE, SSc, or IIM (per (92;93)). Regarding the childhood-onset diseases: JRA will be defined by age of onset \\<17 years of age; for other diseases age of onset will be \\< 18 years. Probands will be diagnosed within 5 years of enrollment in the study, with at least one twin or other sibling of the same gender within 5 years of age and without a recognized systemic rheumatic disorder or other autoimmune disease available for study.\n\nTwin-sibling inclusion criteria:\n\n-Children or adults who are twins or other siblings of a proband sharing the same biological parents, but without a recognized systemic rheumatic or autoimmune disorder, of the same gender and within 5 years of age of the proband. If monozygotic twins are enrolled from a family, another unaffected non-twin sibling sharing the same biological parents will be enrolled for each proband if available to allow for log-linear genetic analyses. All probands and unaffected siblings need to be at least one year of age at the time of autoimmune disease diagnosis. In the case of triplets or greater multiples, all such siblings are eligible for enrollment.\n\nParent inclusion criteria:\n\n-Individuals who are the genetic father and mother of the proband and twin-sib. Both parents will be enrolled whenever possible.\n\nHealthy volunteer inclusion criteria:\n\nHealthy controls, recruited in part via the NIH Healthy Volunteers program, and as reasonably as possible, matched to a subset of probands based on age (within 5 years), gender, and race (when feasible). Healthy volunteers should be in good health, without\n\na recognized systemic rheumatic disorder or other autoimmune disease, and should not be taking antiinflammatory medicines, including nonsteroidal anti-inflammatory drugs (NSAIDs) or corticosteroids.\n\nFor all subjects: ability of the subject or parents/legal guardians to provide informed consent to all aspects of the study after full protocol information is provided.\n\nShould a participant enroll at a time when his/her twin/sibling is willing and able to give informed consent, but his/her twin/sibling never enrolls (eg. Due to no longer being willing or able to give informed consent), the enrolled participant will remain in the study and his/her data will be used in the analyses not pertinent to his/her twin/sibling. Data analysis will also occur in this manner should the enrolled participant s sibling enroll, but never send in blood samples and/or questionnaires.\n\nEXCLUSION CRITERIA:\n\nExclusion criteria for all protocol subjects:\n\n1. severe trauma or vaccinations within 8 weeks of enrollment;\n2. Still s disease/systemic-onset or pauciarticular JRA;\n3. medical illness that in the judgment of the investigators does not allow safe blood draws or other clinical evaluations needed for study participation;\n4. cognitive impairment;\n5. inability to give informed assent or consent.\n\nExclusion criteria for twin-sibs:\n\nNot sharing the same biological parents (being half-brothers or half-sisters). Known criteria for systemic rheumatic disease or autoimmune disease (for example: RA/JRA, SLE/JSLE, SSc/JSSc, IIM/JIIM, Type 1 diabetes, Psoriasis, Still s disease/systemic-onset or pauciarticular JRA, Celiac sprue, Autoimmune thyroid disease, Idiopathic Thrombocytopenia Purpura, Multiple sclerosis, Myasthenia gravis, Systemic vasculitis or Vitiligo).\n\nExclusion criteria for healthy volunteers:\n\nRecognized systemic rheumatic disorder or other autoimmune disease, history of cancer or taking anti-inflammatory medicines, including nonsteroidal anti-inflammatory drugs (NSAIDs) or corticosteroids, severe trauma or vaccinations within 8 weeks.", "minimumAge": "2 Years", "healthyVolunteers": false }, "enrollment": { "type": "ACTUAL", "count": 1056 }, "startDate": "2003-04-21", "completionDate": null, "lastUpdated": "2026-10-27T00:00:00.000Z", "firstPosted": "2003-02-17T00:00:00.000Z", "resultsAvailable": false, "sourceRegistries": [ "clinicaltrials_gov" ], "sourceUrls": [ "https://clinicaltrials.gov/study/NCT00055055" ] }, "identifiers": [ { "idType": "nct", "idValue": "NCT00055055", "declaredBy": "clinicaltrials_gov" } ], "sourceRecords": [ { "registry": "clinicaltrials_gov", "registryName": "ClinicalTrials.gov", "license": "public-domain", "sourceId": "NCT00055055", "sourceUrl": "https://clinicaltrials.gov/study/NCT00055055", "sourceStatus": "COMPLETED", "retrievedAt": "2026-10-28T04:33:09.666Z", "payloadSha256": "12b0294740d09efd3ea63ea8cd46b5ed34743f2613a0e895598c11d4f708281b", "piiRedacted": true } ], "citation": { "canonicalId": "NCT00055055", "sources": [ { "registry": "clinicaltrials_gov", "registryName": "ClinicalTrials.gov", "license": "public-domain", "sourceId": "NCT00055055", "verifyAt": "https://clinicaltrials.gov/study/NCT00055055", "retrievedAt": "2026-10-28T04:33:09.666Z", "payloadSha256": "12b0294740d09efd3ea63ea8cd46b5ed34743f2613a0e895598c11d4f708281b", "text": "ClinicalTrials.gov, record NCT00055055 (https://clinicaltrials.gov/study/NCT00055055), retrieved 2026-10-28, licence: public-domain." } ], "crossRegistry": false, "dedupMethod": "exact cross-registry identifier matching; probabilistic = review only", "text": "Trial NCT00055055, registered in ClinicalTrials.gov, retrieved 2026-10-28. 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