Friends of rare disease research


Latest research studies

Adenine Phosphoribosyltransferase Deficiency, AH Amyloidosis, AHL Amyloidosis, AL Amyloidosis, Alport Syndrome, Atypical Hemolytic Uremic Syndrome, Autoimmune Distal Renal Tubular Acidosis, Autosomal Recessive Proximal Renal Tubular Acidosis, Autosomal Recessive Distal Renal Tubular Acidosis, Autosomal Dominant Polycystic Kidney Disease, Autosomal Recessive Polycystic Kidney Disease, Bartter Syndrome, BK Nephropathy, C3 Glomerulopathy With Monoclonal Gammopathy, C3 Glomerulopathy, Calciphylaxis, Crystalglobulinaemia, Crystal-storing Histiocytosis, Cystinosis, Cystinuria, Dense Deposit Disease, Dent Disease, Denys-Drash Syndrome, Dominant Hypophosphataemia With Nephrolithiasis and/or Osteoporosis, Drug Induced Fanconi Syndrome, Drug-Induced Hypomagnesemia, Drug-Induced Nephrogenic Diabetes Insipidus, Epilepsy, Ataxia, Sensorineural Deafness and Tubulopathy, Fabry Disease, Familial Hypomagnesemia With Hypercalciuria and Nephrocalcinosis, Familial Primary Hypomagnesemia With Hypocalcuria, Familial Primary Hypomagnesaemia With Normocalciuria, Familial Renal Glucosuria, Fanconi Renotubular Syndrome 1, Fanconi Renotubular Syndrome 2, Fanconi Renotubular Syndrome 3, Fibrillary Glomerulonephritis, Fibromuscular Dysplasia, Focal Segmental Glomerulosclerosis, Generalised Pseudohypoaldosteronism Type 1, Gitelman Syndrome, Heavy-Metal-Induced Fanconi Syndrome, Hepatocyte Nuclear Factor 1-Beta-Associated Monogenic Diabetes, Hereditary Renal Hypouricemia, Hereditary Hypophosphatemic Rickets With Hypercalciuria, Hyperuricaemic Nephropathy, IgA Nephropathy, Immunotactoid Glomerulonephritis With Organised Microtubular Mononoclonal Immunoglobulin Deposits, Inherited Renal Cancer Syndromes, Intracapillary Monoclonal IgM Without Cryoglobulin, Intraglomerular/Capillary Lymphoma/Leukaemia, Isolated Autosomal Dominant Hypomagnesaemia Glaudemans Type, Liddle Syndrome, Light Chain Cast Nephropathy, Light Chain Proximal Tubulopathy Without Crystals, Light Chain Proximal Tubulopathy With Crystals, Lowe Syndrome, Membranous Nephropathy, Membranoproliferative Glomerulonephritis, Medullary Cystic Kidney Disease, Minimal Change Nephropathy, Mitochondrial Disease Of The Kidney, Monoclonal Immunoglobulin Deposition Disease, Nail Patella Syndrome, Nephrogenic Diabetes Insipidus, Nephrogenic Syndrome of Inappropriate Antidiuresis, Nephronophthisis, Primary Hypomagnesemia With Secondary Hypocalcemia, Primary Hyperoxaluria, Proliferative Glomerulonephritis With Monoclonal IgG Deposits, Proximal Tubulopathy Without Crystals, Pseudohypoaldosteronism Type 1, 2A-2E, Pure Red Cell Aplasia, Retroperitoneal Fibrosis, Sickle Cell Nephropathy, Shiga Toxin Associated Haemolytic Uraemic Syndrome, Steroid Resistant Nephrotic Syndrome, Steroid-Sensitive Nephrotic Syndrome, Thin Basement Membrane Nephropathy, Thrombotic Microangiopathy With Monoclonal Gammopathy, Type 1 Cryoglobulinaemic Glomerulonephritis, Tuberous Sclerosis, Unclassified Monoclonal Gammopathy Of Renal Significance, Vasculitis

National Registry of Rare Kidney Diseases

35000 | UK Kidney Association

Polycythemia Vera, ET (Essential Thrombocythemia), Polycythemia Vera (PV), Essential Thrombocythemia (ET), Primary Myelofibrosis (MF), Primary Myelofibrosis (PMF), Myelofibrosis, Myelofibrosis (MF), Myelofibrosis, Primary, Myelofibrosis, Post ET, Myelofibrosis, Post PV, Myelofibrosis (PMF), Myelofibrosis,MF, Myelofibrosis; Primary Myelofibrosis; Post-polycythemia Vera Myelofibrosis; Post-essential Thrombocythemia Myelofibrosis, Myelofibrosis Due to and Following Polycythemia Vera, Myelofibrosis Transformation in Essential Thrombocythemia, Myelofibrosis With High Molecular Risk Mutations, MF, Secondary Myelofibrosis, Secondary Myelofibrosis in Myeloproliferative Disease, Secondary Myelofibrosis (Post-Polycythemia Vera Myelofibrosis, Post-Essential Thrombocythemia Myelofibrosis), Post-Polycythemia Vera Myelofibrosis, Post-polycythemia Vera Myelofibrosis (PPV-MF), Post-polycythemia Vera Myelofibrosis (Post-PV MF), Post-polycythemia Vera Myelofibrosis(Post-PV MF), Post-PV MF, Post-Essential Thrombocythemia Myelofibrosis, Post-essential Thrombocythemia Myelofibrosis (PET-MF), Post-essential Thrombocythemia Myelofibrosis(Post-ET MF), Post-essential Thrombocythemia Myelofibrosis (Post-ET MF), Post-ET MF, Pre-fibrotic Myelofibrosis, Myeloproliferative Disorder, Myeloproliferative Disorders, Myeloproliferative Disorders (MPD), Myeloproliferative Neoplasms (MPNs), Myeloproliferative Neoplasm(MPN)-Associated Myelofibrosis, Myeloproliferative Neoplasm With 10% Blasts or Higher, Myeloproliferative Neoplasms, MPN, MPN (Myeloproliferative Neoplasms), MPN-associated Myelofibrosis, Myeloproliferative Neoplasm, Unclassifiable, Myeloproliferative Neoplasm, Not Otherwise Specified, Accelerated Phase MPN, Accelerated Phase Myeloproliferative Neoplasm, Blast Phase MPN, Blast Phase Myeloproliferative Neoplasm, Thrombocythemia Myelofibrosis (PET-MF), Thrombocythemia, Essential, Thrombocythemia, Hemorrhagic, Agnogenic Myeloid Metaplasia, Chronic Idiopathic Myelofibrosis, Idiopathic Myelofibrosis, MDS/MPN Crossover Syndromes

MPN PROGRESSion Registry: Observational Study Tracking Symptoms, Treatments, an...

5000 | MPN Research Foundation

1 Question

Er

Apr 10, 2021

NCT04679103 | Completed | Paroxysmal Nocturnal Hemoglobinuria RESULTS

Hi, I wanted to know where can I find the results of the study on PNH that has recently been completed and how do I enroll in the study NCT03818607 | Active, not recruiting | Paroxysmal Nocturnal Hemoglobinuria


Ja ER you can contact the study sponsor and provide them the reference ID of the study NCT04679103 - as mentioned in the summary of the studies with results this study was sponsored by Generium - I googled their contact address which is https://www.generium.ru/en/contacts/ - Hope this helps - as for your second query just follow the study listing and click on the study site on right hand of your screen which will take you to one of the study sites where you can find out information about enrolling in the study - good luck

Apr 10, 2021

Leave your's question


Please Login to post question

How Do Clinical Trials Work?
American Society of Gene & Cell Therapy
Stay Connected
Loading...