{ "api_version": "1", "request": { "url": "https://clinicaltrialsfind.com/api/v1/search.json?condition=BPAN", "query": { "condition": "BPAN" }, "page_size": 10 }, "pagination": { "page": 1, "page_size": 10, "total_count": 4, "total_pages": 1, "next_page_url": null, "previous_page_url": null }, "source": "remote", "last_synced_at": "2026-06-26T07:09:45.470Z", "attribution": "Data derived from public ClinicalTrials.gov records. The official record at https://clinicaltrials.gov/ remains the source of truth for current availability, contacts, and full study details.", "notes": [ "This endpoint exposes only public summary fields — no participant contact emails, phone numbers, or scraped investigator contact details.", "For contact information and full protocol detail, follow each trial's `official_url` to the ClinicalTrials.gov record.", "This API is a navigational aid. It does not provide medical advice, eligibility determinations, or compensation guarantees." ], "trials": [ { "nct_id": "NCT06938542", "title": "Palliative Care Needs of Children With Rare Diseases and Their Families", "overall_status": "ENROLLING_BY_INVITATION", "study_type": "INTERVENTIONAL", "phases": [ "NA" ], "conditions": [ "Trisomy 13 Syndrome", "Arthrogryposis Congenita Multiplex With Intestinal Atresia", "Asparagine Synthetase Deficiency", "CHARGE Syndrome", "Early Infantile Epileptic Encephalopathy", "FOXG1 Syndrome", "KBG Syndrome", "Noonan Syndrome", "Severe Hemophilia A", "Short Bowel Syndrome", "Beta-Propeller Protein-Associated Neurodegeneration", "Brain Injury of Prematurity With Periventricular Leukomalacia", "Chromosome 17p13.3 Microdeletion Syndrome", "Chromosome 1q43-1q44 Deletion", "Cockayne Syndrome", "Congenital Diaphragmatic Hernia", "End-Stage Renal Disease With Cloacal Anomaly", "Mitochondrial Depletion Disorder", "Severe Factor VII Deficiency" ], "interventions": [ { "name": "Family Centered pediatric palliative care for family caregivers of children with rare diseases.", "type": "BEHAVIORAL" } ], "intervention_types": [ "BEHAVIORAL" ], "sponsor": "Children's National Research Institute", "sponsor_class": "OTHER", "healthy_volunteers": true, "eligibility": { "minimum_age": "12 Months", "maximum_age": "99 Years", "sex": "ALL", "summary": "12 Months to 99 Years" }, "enrollment_count": 480, "start_date": "2025-10-02", "completion_date": "2029-08-02", "has_results": false, "last_update_posted_date": "2026-01-28", "last_synced_at": "2026-06-26T07:09:45.470Z", "location_count": 1, "location_summary": "Washington D.C., District of Columbia", "locations": [ { "city": "Washington D.C.", "state": "District of Columbia" } ], "official_url": "https://clinicaltrials.gov/study/NCT06938542" }, { "nct_id": "NCT03047369", "title": "The Myelin Disorders Biorepository Project", "overall_status": "RECRUITING", "study_type": "OBSERVATIONAL", "phases": [], "conditions": [ "Leukodystrophy", "White Matter Disease", "Leukoencephalopathies", "4H Syndrome", "Adrenoleukodystrophy", "AMN", "ALD", "ALD Gene Mutation", "ALD (Adrenoleukodystrophy)", "X-linked Adrenoleukodystrophy", "X-ALD", "Adrenomyeloneuropathy", "Aicardi Goutieres Syndrome", "AGS", "Alexander Disease", "Alexanders Leukodystrophy", "AxD", "ADLD", "Canavan Disease", "CTX", "Cerebrotendinous Xanthomatoses", "Krabbe Disease", "GALC Deficiency", "Globoid Leukodystrophy", "TUBB4A-Related Leukodystrophy", "H-ABC - Hypomyelination, Atrophy of Basal Ganglia and Cerebellum", "HBSL", "HBSL - Hypomyelination, Brain Stem, Spinal Cord, Leg Spasticity", "LBSL", "Leukoencephalopathy With Brain Stem and Spinal Cord Involvement and High Lactate Syndrome (Disorder)", "Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation", "ALSP", "CSF1R Gene Mutation", "HCC - Hypomyelination and Congenital Cataract", "MLC1", "Megalencephalic Leukoencephalopathy With Subcortical Cysts", "MLD", "Metachromatic Leukodystrophy", "PMD", "Pelizaeus-Merzbacher Disease", "PLP1 Null Syndrome", "PLP1 Gene Duplication | Blood or Tissue | Mutations", "Pelizaeus Merzbacher Like Disease", "Peroxisomal Biogenesis Disorder", "Zellweger Syndrome", "Refsum Disease", "Salla Disease", "Sialic Storage Disease", "Sjögren", "Sjogren-Larsson Syndrome", "Van Der Knapp Disease", "Vanishing White Matter Disease", "Charcot-Marie-Tooth", "CMT", "Mct8 (Slc16A2)-Specific Thyroid Hormone Cell Transporter Deficiency", "Allan-Herndon-Dudley Syndrome", "Cadasil", "Cockayne Syndrome", "Multiple Sulfatase Deficiency", "Gangliosidoses", "GM2 Gangliosidosis", "BPAN", "Labrune Syndrome", "LCC", "Mucopolysaccharidoses", "TBCK-Related Intellectual Disability Syndrome" ], "interventions": [], "intervention_types": [], "sponsor": "Children's Hospital of Philadelphia", "sponsor_class": "OTHER", "healthy_volunteers": false, "eligibility": { "minimum_age": null, "maximum_age": null, "sex": "ALL", "summary": "Not listed" }, "enrollment_count": 12000, "start_date": "2016-12-08", "completion_date": "2030-12-08", "has_results": false, "last_update_posted_date": "2025-10-23", "last_synced_at": "2026-06-26T07:09:45.470Z", "location_count": 23, "location_summary": "Los Angeles, California • Orange, California • Palo Alto, California + 18 more", "locations": [ { "city": "Los Angeles", "state": "California" }, { "city": "Orange", "state": "California" }, { "city": "Palo Alto", "state": "California" }, { "city": "Sacramento", "state": "California" }, { "city": "San Diego", "state": "California" } ], "official_url": "https://clinicaltrials.gov/study/NCT03047369" }, { "nct_id": "NCT02587858", "title": "NBIAready: Online Collection of Natural History Patient-reported Outcome Measures", "overall_status": "UNKNOWN", "study_type": "OBSERVATIONAL", "phases": [], "conditions": [ "Neurodegeneration With Brain Iron Accumulation (NBIA)" ], "interventions": [], "intervention_types": [], "sponsor": "Susan J. Hayflick", "sponsor_class": "OTHER", "healthy_volunteers": false, "eligibility": { "minimum_age": null, "maximum_age": null, "sex": "ALL", "summary": "Not listed" }, "enrollment_count": 300, "start_date": "2015-04", "completion_date": "2025-04", "has_results": false, "last_update_posted_date": "2020-10-08", "last_synced_at": "2026-06-26T07:09:45.470Z", "location_count": 1, "location_summary": "Portland, Oregon", "locations": [ { "city": "Portland", "state": "Oregon" } ], "official_url": "https://clinicaltrials.gov/study/NCT02587858" }, { "nct_id": "NCT02699190", "title": "LeukoSEQ: Whole Genome Sequencing as a First-Line Diagnostic Tool for Leukodystrophies", "overall_status": "COMPLETED", "study_type": "OBSERVATIONAL", "phases": [], "conditions": [ "Leukodystrophy", "White Matter Disease", "4H Syndrome", "Adrenoleukodystrophy", "AMN", "ALD", "ALD (Adrenoleukodystrophy)", "X-linked Adrenoleukodystrophy", "X-ALD", "Adrenomyeloneuropathy", "Aicardi Goutieres Syndrome", "AGS", "Alexander Disease", "Alexanders Leukodystrophy", "AxD", "ADLD", "Canavan Disease", "CTX", "Cerebrotendinous Xanthomatoses", "Krabbe Disease", "GALC Deficiency", "Globoid Leukodystrophy", "TUBB4A-Related Leukodystrophy", "H-ABC - Hypomyelination, Atrophy of Basal Ganglia and Cerebellum", "HBSL", "HBSL - Hypomyelination, Brain Stem, Spinal Cord, Leg Spasticity", "LBSL", "Leukoencephalopathy With Brain Stem and Spinal Cord Involvement and High Lactate Syndrome (Disorder)", "Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation", "ALSP", "CSF1R Gene Mutation", "HCC - Hypomyelination and Congenital Cataract", "MLC1", "Megalencephalic Leukoencephalopathy With Subcortical Cysts 1", "MLD", "Metachromatic Leukodystrophy", "PMD", "Pelizaeus-Merzbacher Disease", "PLP1 Null Syndrome", "PLP1 Gene Duplication | Blood or Tissue | Mutations", "Pelizaeus-Merzbacher-Like Disease, 1", "Peroxisomal Biogenesis Disorder", "Zellweger Syndrome", "Refsum Disease", "Salla Disease", "Sialic Storage Disease", "Sjögren", "Sjogren-Larsson Syndrome", "Van Der Knapp Disease", "Vanishing White Matter Disease", "Charcot-Marie-Tooth", "CMT", "Mct8 (Slc16A2)-Specific Thyroid Hormone Cell Transporter Deficiency", "Allan-Herndon-Dudley Syndrome", "Cadasil", "Cockayne Syndrome", "Multiple Sulfatase Deficiency", "Gangliosidoses", "GM2 Gangliosidosis", "BPAN", "Labrune Syndrome", "LCC", "Mucopolysaccharidoses", "TBCK-Related Intellectual Disability Syndrome" ], "interventions": [], "intervention_types": [], "sponsor": "Children's Hospital of Philadelphia", "sponsor_class": "OTHER", "healthy_volunteers": false, "eligibility": { "minimum_age": null, "maximum_age": "18 Years", "sex": "ALL", "summary": "Up to 18 Years" }, "enrollment_count": 236, "start_date": "2017-01-06", "completion_date": "2024-10-31", "has_results": true, "last_update_posted_date": "2025-11-10", "last_synced_at": "2026-06-26T07:09:45.470Z", "location_count": 1, "location_summary": "Philadelphia, Pennsylvania", "locations": [ { "city": "Philadelphia", "state": "Pennsylvania" } ], "official_url": "https://clinicaltrials.gov/study/NCT02699190" } ] }