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Montoya Hemophilia & Thrombosis Program","Albuquerque","New Mexico","87131",{"type":55,"coordinates":656},[657,658],-106.65114,35.08449,{"lat":658,"lon":657},[661,664],{"name":662,"role":37,"phone":10,"phoneExt":10,"email":663},"Jessica Salazar","jtsalazar@salud.unm.edu",{"name":665,"role":30,"phone":10,"phoneExt":10,"email":10},"Shirley Abraham, MD",{"facility":667,"status":48,"city":668,"state":669,"zip":670,"country":52,"countryCode":53,"cosmosGeoPoint":671,"geoPoint":675,"contacts":676},"Western New York BloodCare","Buffalo","New York","14202",{"type":55,"coordinates":672},[673,674],-78.87837,42.88645,{"lat":674,"lon":673},[677,680],{"name":678,"role":37,"phone":10,"phoneExt":10,"email":679},"Michelle Acosta","macosta@wnybloodcare.org",{"name":681,"role":30,"phone":10,"phoneExt":10,"email":10},"Beverly Schaefer, MD",{"facility":683,"status":48,"city":684,"state":669,"zip":685,"country":52,"countryCode":53,"cosmosGeoPoint":686,"geoPoint":690,"contacts":691},"Northwell Health Hemostasis and Thrombosis Center at Long Island Jewish and Cohen Children's Medical Center","Hyde Park","11040",{"type":55,"coordinates":687},[688,689],-73.93319,41.78482,{"lat":689,"lon":688},[692,695],{"name":693,"role":37,"phone":10,"phoneExt":10,"email":694},"Mabel Origho","morigho@northwell.edu",{"name":696,"role":30,"phone":10,"phoneExt":10,"email":10},"Suchitra Acharya, MD",{"facility":698,"status":48,"city":669,"state":669,"zip":699,"country":52,"countryCode":53,"cosmosGeoPoint":700,"geoPoint":704,"contacts":705},"Weill Cornell Medical College - New York Presbyterian Hospital","10065",{"type":55,"coordinates":701},[702,703],-74.00597,40.71427,{"lat":703,"lon":702},[706,710],{"name":707,"role":37,"phone":708,"phoneExt":10,"email":709},"Ilene Goldberg","212-746-3403","igoldber@med.cornell.edu",{"name":711,"role":30,"phone":10,"phoneExt":10,"email":10},"Catherine McGuinn, 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Ritzie-Spinks","aritziespinks@novanthealth.org",{"name":770,"role":30,"phone":10,"phoneExt":10,"email":10},"Christine Bolen, MD",{"facility":772,"status":48,"city":773,"state":743,"zip":774,"country":52,"countryCode":53,"cosmosGeoPoint":775,"geoPoint":779,"contacts":780},"East Carolina University Hemophilia Treatment Center","Greenville","27834",{"type":55,"coordinates":776},[777,778],-77.36635,35.61266,{"lat":778,"lon":777},[781,784],{"name":782,"role":37,"phone":10,"phoneExt":10,"email":783},"Danielle McCloskey","mccloskeyd19@ecu.edu",{"name":785,"role":30,"phone":10,"phoneExt":10,"email":10},"Beng Fuh, MD",{"facility":787,"status":48,"city":788,"state":743,"zip":789,"country":52,"countryCode":53,"cosmosGeoPoint":790,"geoPoint":794,"contacts":795},"Wake Forest University Health Sciences","Winston-Salem","27157",{"type":55,"coordinates":791},[792,793],-80.24422,36.09986,{"lat":793,"lon":792},[796,800],{"name":797,"role":37,"phone":798,"phoneExt":10,"email":799},"Debra Holder","336-716-9551","djholde@wakehealth.edu",{"name":801,"role":30,"phone":10,"phoneExt":10,"email":10},"Amanda Blair, MD",{"facility":803,"status":48,"city":804,"state":805,"zip":806,"country":52,"countryCode":53,"cosmosGeoPoint":807,"geoPoint":811,"contacts":812},"Akron Children's Hospital - Showers Center for Cancer & Blood Disorders","Akron","Ohio","44308",{"type":55,"coordinates":808},[809,810],-81.51901,41.08144,{"lat":810,"lon":809},[813,816],{"name":814,"role":37,"phone":10,"phoneExt":10,"email":815},"Valisha Watkins","vwatkins1@akronchildrens.org",{"name":817,"role":30,"phone":10,"phoneExt":10,"email":10},"Nicole Kendel, MD",{"facility":819,"status":48,"city":820,"state":805,"zip":821,"country":52,"countryCode":53,"cosmosGeoPoint":822,"geoPoint":826,"contacts":827},"Cincinnati Children's Hospital Medical Center, Hemophilia & Thrombosis Center","Cincinnati","45229",{"type":55,"coordinates":823},[824,825],-84.51439,39.12711,{"lat":825,"lon":824},[828,831],{"name":829,"role":37,"phone":10,"phoneExt":10,"email":830},"Kenzie Nolte","mackenzie.nolte@cchmc.org",{"name":832,"role":30,"phone":10,"phoneExt":10,"email":10},"Cristina Tarango, MD",{"facility":834,"status":48,"city":820,"state":805,"zip":835,"country":52,"countryCode":53,"cosmosGeoPoint":836,"geoPoint":838,"contacts":839},"University of Cincinnati Medical Center Hemophilia Treatment Center","45267",{"type":55,"coordinates":837},[824,825],{"lat":825,"lon":824},[840,843],{"name":841,"role":37,"phone":10,"phoneExt":10,"email":842},"Jill Roeder","roederjr@ucmail.uc.edu",{"name":844,"role":30,"phone":10,"phoneExt":10,"email":10},"Kristine Karkoska, MD",{"facility":846,"status":48,"city":847,"state":805,"zip":848,"country":52,"countryCode":53,"cosmosGeoPoint":849,"geoPoint":853,"contacts":854},"University Hospitals Health System Cleveland","Cleveland","44106",{"type":55,"coordinates":850},[851,852],-81.69541,41.4995,{"lat":852,"lon":851},[855,858],{"name":856,"role":37,"phone":10,"phoneExt":10,"email":857},"George Lucas","George.Lucas@UHhospitals.org",{"name":859,"role":30,"phone":10,"phoneExt":10,"email":10},"John Letterio, MD",{"facility":861,"status":48,"city":862,"state":805,"zip":863,"country":52,"countryCode":53,"cosmosGeoPoint":864,"geoPoint":868,"contacts":869},"Nationwide Children's Hospital Columbus","Columbus","43205",{"type":55,"coordinates":865},[866,867],-82.99879,39.96118,{"lat":867,"lon":866},[870,873],{"name":871,"role":37,"phone":10,"phoneExt":10,"email":872},"Elliot Smith","elliot.smith@cchmc.org",{"name":874,"role":30,"phone":10,"phoneExt":10,"email":10},"Amy Dunn, MD",{"facility":876,"status":48,"city":877,"state":805,"zip":878,"country":52,"countryCode":53,"cosmosGeoPoint":879,"geoPoint":883,"contacts":884},"Dayton Children's Hemostasis and Thrombosis Center","Dayton","45404",{"type":55,"coordinates":880},[881,882],-84.19161,39.75895,{"lat":882,"lon":881},[885,888],{"name":886,"role":37,"phone":10,"phoneExt":10,"email":887},"Bethany Linegang","LinegangB@childrensdayton.org",{"name":889,"role":30,"phone":10,"phoneExt":10,"email":10},"Jordan Wright, MD",{"facility":891,"status":48,"city":892,"state":805,"zip":893,"country":52,"countryCode":53,"cosmosGeoPoint":894,"geoPoint":898,"contacts":899},"Northwest Ohio Hemophilia Treatment Center at the Toledo Hospital","Toledo","43606",{"type":55,"coordinates":895},[896,897],-83.55521,41.66394,{"lat":897,"lon":896},[900,904],{"name":901,"role":37,"phone":902,"phoneExt":10,"email":903},"Patricia Ahrens","419-291-2210","patricia.ahrens@promedica.org",{"name":905,"role":30,"phone":10,"phoneExt":10,"email":10},"Dagmar Stein, MD",{"facility":907,"status":48,"city":908,"state":909,"zip":910,"country":52,"countryCode":53,"cosmosGeoPoint":911,"geoPoint":915,"contacts":916},"Children's Hospital of Philadelphia","Philadelphia","Pennsylvania","19104",{"type":55,"coordinates":912},[913,914],-75.16362,39.95238,{"lat":914,"lon":913},[917,920],{"name":918,"role":37,"phone":10,"phoneExt":10,"email":919},"Praharsha Konde","kondep@chop.edu",{"name":921,"role":30,"phone":10,"phoneExt":10,"email":10},"Leslie Raffini, MD",{"facility":923,"status":48,"city":908,"state":909,"zip":910,"country":52,"countryCode":53,"cosmosGeoPoint":924,"geoPoint":926,"contacts":927},"Penn Comprehensive Hemophilia and Thrombophilia Program\u002FHospital of the University of Pennsylvania",{"type":55,"coordinates":925},[913,914],{"lat":914,"lon":913},[928,932],{"name":929,"role":37,"phone":930,"phoneExt":10,"email":931},"Karen Panckeri","215-614-0506","Karen.Panckeri@uphs.upenn.edu",{"name":933,"role":30,"phone":10,"phoneExt":10,"email":10},"Adam Cuker, MD",{"facility":935,"status":48,"city":936,"state":909,"zip":937,"country":52,"countryCode":53,"cosmosGeoPoint":938,"geoPoint":942,"contacts":943},"Hemophilia Center of Western Pennsylvania","Pittsburgh","15213",{"type":55,"coordinates":939},[940,941],-79.99589,40.44062,{"lat":941,"lon":940},[944,948],{"name":945,"role":37,"phone":946,"phoneExt":10,"email":947},"Deborah Vehec","412-209-7564","dvehec@vitalant.org",{"name":949,"role":30,"phone":10,"phoneExt":10,"email":10},"Nicoletta Machin, MD",{"facility":951,"status":48,"city":952,"state":953,"zip":954,"country":52,"countryCode":53,"cosmosGeoPoint":955,"geoPoint":959,"contacts":960},"Rhode Island Hospital Hemostasis and Thrombosis Center","Providence","Rhode Island","02903",{"type":55,"coordinates":956},[957,958],-71.41283,41.82399,{"lat":958,"lon":957},[961,964],{"name":962,"role":37,"phone":10,"phoneExt":10,"email":963},"Asher Dillman","ADillmann@Lifespan.org",{"name":965,"role":30,"phone":10,"phoneExt":10,"email":10},"Salley Pels, MD",{"facility":967,"status":48,"city":968,"state":969,"zip":970,"country":52,"countryCode":53,"cosmosGeoPoint":971,"geoPoint":975,"contacts":976},"St. Jude Children's Research Hospital","Memphis","Tennessee","38105",{"type":55,"coordinates":972},[973,974],-90.04898,35.14953,{"lat":974,"lon":973},[977,980],{"name":978,"role":37,"phone":10,"phoneExt":10,"email":979},"Margie King","margaret.king@stjude.org",{"name":981,"role":30,"phone":10,"phoneExt":10,"email":10},"Ulrike Reiss, MD",{"facility":983,"status":48,"city":984,"state":969,"zip":985,"country":52,"countryCode":53,"cosmosGeoPoint":986,"geoPoint":990,"contacts":991},"Vanderbilt University Medical Center","Nashville","37212",{"type":55,"coordinates":987},[988,989],-86.78444,36.16589,{"lat":989,"lon":988},[992,995],{"name":993,"role":37,"phone":10,"phoneExt":10,"email":994},"Stephanie Minogue","stephanie.minogue@vumc.org",{"name":996,"role":30,"phone":10,"phoneExt":10,"email":10},"Shannon Walker, MD",{"facility":998,"status":48,"city":999,"state":1000,"zip":1001,"country":52,"countryCode":53,"cosmosGeoPoint":1002,"geoPoint":1006,"contacts":1007},"Children's Blood and Cancer Center of Central Texas","Austin","Texas","78723",{"type":55,"coordinates":1003},[1004,1005],-97.74306,30.26715,{"lat":1005,"lon":1004},[1008,1011],{"name":1009,"role":37,"phone":10,"phoneExt":10,"email":1010},"Rhea Robinson","rmrobinson@ascension.org",{"name":1012,"role":30,"phone":10,"phoneExt":10,"email":10},"Arun Gurunathan, MD",{"facility":1014,"status":48,"city":1015,"state":1000,"zip":1016,"country":52,"countryCode":53,"cosmosGeoPoint":1017,"geoPoint":1021,"contacts":1022},"North Texas Hemophilia and Thrombosis Program - Pediatric Program \u002F Center for Cancer & Blood Disorders","Dallas","75235",{"type":55,"coordinates":1018},[1019,1020],-96.80667,32.78306,{"lat":1020,"lon":1019},[1023,1026],{"name":1024,"role":37,"phone":10,"phoneExt":10,"email":1025},"Anna Winborn","ANNA.WINBORN@childrens.com",{"name":1027,"role":30,"phone":10,"phoneExt":10,"email":10},"Ayeshia Zia, MD",{"facility":1029,"status":48,"city":1015,"state":1000,"zip":1030,"country":52,"countryCode":53,"cosmosGeoPoint":1031,"geoPoint":1033,"contacts":1034},"North Texas Comprehensive Hemophilia Treatment Center","75390",{"type":55,"coordinates":1032},[1019,1020],{"lat":1020,"lon":1019},[1035,1038],{"name":1036,"role":37,"phone":10,"phoneExt":10,"email":1037},"Kasia Harrah","kasia.harrah@utsouthwestern.edu",{"name":1039,"role":30,"phone":10,"phoneExt":10,"email":10},"Yu-Min Shen, MD",{"facility":1041,"status":48,"city":1042,"state":1000,"zip":1043,"country":52,"countryCode":53,"cosmosGeoPoint":1044,"geoPoint":1048,"contacts":1049},"Gulf States Hemophilia and Thrombophilia Center","Houston","77030",{"type":55,"coordinates":1045},[1046,1047],-95.36327,29.76328,{"lat":1047,"lon":1046},[1050,1054],{"name":1051,"role":37,"phone":1052,"phoneExt":10,"email":1053},"Katherine Addy","713-500-8352","Katherine.E.Addy@uth.tmc.edu",{"name":1055,"role":30,"phone":10,"phoneExt":10,"email":10},"Miguel A. Escobar, MD",{"facility":1057,"status":48,"city":1042,"state":1000,"zip":1043,"country":52,"countryCode":53,"cosmosGeoPoint":1058,"geoPoint":1060,"contacts":1061},"Texas Children's Hemophilia & Thrombosis Center\u002FBaylor College of Medicine",{"type":55,"coordinates":1059},[1046,1047],{"lat":1047,"lon":1046},[1062,1066],{"name":1063,"role":37,"phone":1064,"phoneExt":10,"email":1065},"Janine Starks","832-824-4969","jxstarks@texaschildrens.org",{"name":1067,"role":30,"phone":10,"phoneExt":10,"email":10},"Clay Cohen, MD",{"facility":1069,"status":48,"city":1070,"state":1000,"zip":1071,"country":52,"countryCode":53,"cosmosGeoPoint":1072,"geoPoint":1076,"contacts":1077},"South Texas Comprehensive Hemophilia and Thrombophilia Treatment Center","San Antonio","78229",{"type":55,"coordinates":1073},[1074,1075],-98.49363,29.42412,{"lat":1075,"lon":1074},[1078,1081],{"name":1079,"role":37,"phone":10,"phoneExt":10,"email":1080},"Shawn Lade","lade@uthscsa.edu",{"name":1082,"role":30,"phone":10,"phoneExt":10,"email":10},"Deanna Maida, MD",{"facility":1084,"status":48,"city":1085,"state":1086,"zip":1087,"country":52,"countryCode":53,"cosmosGeoPoint":1088,"geoPoint":1092,"contacts":1093},"Washington Center for Bleeding Disorders","Seattle","Washington","98101",{"type":55,"coordinates":1089},[1090,1091],-122.33207,47.60621,{"lat":1091,"lon":1090},[1094,1097],{"name":1095,"role":37,"phone":10,"phoneExt":10,"email":1096},"Sophia Beyer","sophia.beyer@wacbd.org",{"name":1098,"role":30,"phone":10,"phoneExt":10,"email":10},"Rebecca Kruse-Jarres, MD",{"facility":1100,"status":48,"city":1101,"state":1102,"zip":1103,"country":52,"countryCode":53,"cosmosGeoPoint":1104,"geoPoint":1108,"contacts":1109},"Hemophilia Outreach Center Green Bay","Green Bay","Wisconsin","54311",{"type":55,"coordinates":1105},[1106,1107],-88.01983,44.51916,{"lat":1107,"lon":1106},[1110,1114],{"name":1111,"role":37,"phone":1112,"phoneExt":10,"email":1113},"Andrea Miller","920-965-0606","Andream@hocgb.org",{"name":1115,"role":30,"phone":10,"phoneExt":10,"email":10},"Kenneth Friedman, MD",{"facility":1117,"status":48,"city":1118,"state":1102,"zip":1119,"country":52,"countryCode":53,"cosmosGeoPoint":1120,"geoPoint":1124,"contacts":1125},"Comprehensive Center for Bleeding Disorders","Milwaukee","53226",{"type":55,"coordinates":1121},[1122,1123],-87.90647,43.0389,{"lat":1123,"lon":1122},[1126,1129],{"name":1127,"role":37,"phone":10,"phoneExt":10,"email":1128},"Karen Stephany","kstephany@versiti.org",{"name":1130,"role":30,"phone":10,"phoneExt":10,"email":10},"Lynn Malec, MD",{"type":1132,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[1134,1137,1140,1142,1144,1146,1148],{"name":1135,"class":1136},"Pfizer","INDUSTRY",{"name":1138,"class":1139},"Hemophilia of Georgia, Inc.","OTHER",{"name":1141,"class":1136},"Genentech, Inc.",{"name":1143,"class":1136},"CSL Behring",{"name":1145,"class":1136},"Sanofi",{"name":1147,"class":1136},"Novo Nordisk A\u002FS",{"name":1149,"class":1136},"Hemab ApS","100054158","athn-transcends-a-natural-history-study-of-non-neoplastic-hematologic-disorders-100054158",false,"NCT04398628","ATHN Transcends: A Natural History Study of Non-Neoplastic Hematologic Disorders","ATHN Transcends: A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment in People With Non-Neoplastic Hematologic Disorders","Participants who meet the following inclusion criteria and none of the exclusion criteria are eligible for enrollment in one of the open disease-specific arms.\n\nInclusion Criteria:\n\n1. Any age\n2. Having a congenital or acquired blood disorder; or\n3. Having a bleeding phenotype as indicated by an age adjusted abnormal ISTH Bleeding Assessment Tool score with an unknown diagnosis; or\n4. Connective tissue disorder with bleeding tendency as indicated by an age adjusted abnormal ISTH Bleeding Assessment Tool score.\n5. Eligible for a currently active disease-specific arm.\n6. Concurrent enrollment in the ATHNdataset or current ATHNdataset participant.\n\nExclusion Criteria:\n\n1\\. Does not qualify for inclusion in a currently activedisease-specific arm; participants may be eligible to enroll as future cohorts and arms are activated; 2. Unable to give informed consent or assent 3. Unwilling to perform study procedures\n\nCohort Participant Selection\n\nEach participant is to be enrolled in the cohort for which they qualify as defined below.\n\nHemophilia Cohort\n\nInclusion Criteria:\n\nParticipants who meet any of the following inclusion criteria are eligible for enrollment into this cohort:\n\n1. Factor VIII or factor IX activity \\\u003C50%, without another explanation for low clotting factor other than congenital hemophilia or being a known carrier for congenital hemophilia; OR\n2. Carrier for congenital hemophilia with a factor VIII \\>=50% or factor IX activity \\>=50% with or without a bleeding phenotype as indicated by an ISTH Bleeding Assessment Tool score of ≥4 for adult males, ≥6 for adult females, or ≥3 for children younger than 18 years OR\n3. Known congenital hemophilia that have a factor level \\>50% after receiving vector, OR 4. Acquired hemophilia.\n\nExclusion Criteria:\n\nNone\n\nVon Willebrand Disease Cohort\n\nInclusion Criteria:\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1\\. Meeting the definition of VWD or low VWF per most recent international guidelines\n\nExclusion Criteria:\n\nNone\n\nCongenital Platelet Disorders Cohort\n\nInclusion Criteria:\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1. Abnormalities of platelet function a. Glanzmann thrombasthenia (GPIIb or GPIIIa) b. Bernard-Soulier syndrome (GPIbalpha, GPIbbeta, or GPIX)\n2. Abnormalities of platelet granules\n3. Abnormalities of platelet signal transduction\n4. Abnormalities of platelet secretion\n5. Collagen Receptor Defect\n6. ADP Receptor Defect\n7. Thromboxane Receptor Defect\n8. Giant Platelet Disorder\n9. Abnormalities in platelet aggregation testing due to another or unknown cause (not drug related)\n\nExclusion Criteria:\n\n1\\. Platelet disorders secondary to medications or other substances\n\nRare Disorders Cohort\n\nInclusion Criteria:\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1\\. Have an established Rare Coagulation Disorder (RCD) diagnosis of one of the following:\n\n1. PAI-1 deficiency\n2. Factor I, II, V, VII, X, XI, XIII deficiencies\n3. Combined FV and FVIII deficiency\n4. Plasminogen deficiency\n5. Decreased tissue plasminogen activator\n6. Afibrinogenemia\u002Fhypofibrinogenemia\u002Fdysfibrinogenemia\n7. Thrombotic Thrombocytopenia Purpura or Congenital Hemolytic Uremic Syndrome\n8. Wiskott-Aldrich\n9. Methylenetetrahydrofolate Reductase Deficiency\n\nExclusion Criteria:\n\nNone\n\nBleeding NOS Cohort\n\nInclusion Criteria:\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1. Have a bleeding phenotype as indicated by an ISTH Bleeding Assessment Tool score of ≥4 for adult males, ≥6 for adult females, or ≥3 for children younger than 18 years with an unknown diagnosis, OR\n2. Connective tissue disorder with bleeding tendency as indicated by an ISTH Bleeding Assessment Tool score of ≥4 for adult males, ≥6 for adult females, or ≥3 for children younger than 18 years.\n\nExclusion Criteria:\n\nNone\n\nThrombosis\u002FThrombophilia Cohort\n\nInclusion Criteria\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1\\. Have a prior history of arterial or venous thrombosis. 2. Participants with a known congenital or acquired thrombophilia with or without thrombosis.\n\na. Common congenital thrombophilias: i. Protein C deficiency ii. Protein S deficiency iii. Antithrombin deficiency iv. Factor V Leiden v. Prothrombin gene mutation b. Rare genetic factors i. Hyperhomocysteinemia c. Indeterminate genetic factors i. Elevated factor VIII ii. Elevated factor IX iii. Elevated factor XI iv. Elevated lipoprotein (a) d. Acquired thrombophilias i. Lupus anticoagulant ii. Anti-cardiolipin antibodies\u002FBeta2 glycoprotein antibodies iii. Antiphospholipid syndrome\n\nExclusion Criteria Acquired thrombophilia secondary to medications (birth control pills or hormone replacement therapy), overweight or obesity, smoking, cancer, pregnancy, surgery, injury, prolonged inactivity\u002Fbedrest, heart failure, inflammatory bowel disease, or kidney disease\n\nNon-Neoplastic Hematologic Conditions Cohort\n\nInclusion Criteria\n\nParticipants who meet the following inclusion criteria are eligible for enrollment into this cohort:\n\n1\\. Having any congenital or acquired non-neoplastic hematologic disorder not included in any other cohort\n\nExclusion Criteria None\n\nArm\u002FModule Participant Selection\n\nPreviously Untreated Patients Arm\n\nInclusion Criteria:\n\n1. Diagnosis of congenital hemophilia A (FVIII \\\u003C40%) or hemophilia B (FIX \\\u003C40% or below lower limit for age)\n2. Age \\\u003C18 years at time of enrollment\n3. Parent or authorized guardian or legally authorized representative (LAR) can provide informed consent\n4. Care established at one of the ATHN Transcends participating HTCs\n5. Clotting Factor Concentrate (CFC) exposure, fresh frozen plasma (FFP), cryoprecipitate, and single donor platelets \\\u003C3 exposure days (ED)\n\nExclusion Criteria\n\n1. Concomitant diagnosis with another bleeding disorder\n2. History of a confirmed, positive inhibitor\n\nINHIBIT Module\n\nInclusion Criteria:\n\n1\\. Diagnosis of severe factor VIII deficiency with baseline factor VIII level \\\u003C1% 2. Initiating or plan to initiate prophylaxis with emicizumab or factor replacement 3. Factor concentrate exposure, Fresh Frozen Plasma (FFP), cryoprecipitate, and single donor platelets ≤3 EDs 4. ≤5 years of age\n\nExclusion Criteria\n\n1. Concomitant diagnosis with bleeding disorder other than hemophilia A\n2. Immune disorder\n3. Previous history or presence of factor VIII inhibitor. A confirmed, positive inhibitor is defined as two consecutive positive inhibitor titers (≥ 0.6 BU) that result in changes in treatment recommendations.\n\nEfanesoctocog alfa (ALTUVIIIO®) Module\n\nInclusion criteria:\n\n1. Ability of the potential participant's legally authorized representative (e.g., their parent or legal guardian) to understand the purpose and risks of the study and provide signed and dated informed consent and authorization to use confidential health information in accordance with national and local participant privacy regulation.\n2. People with severe HA with a baseline FVIII activity of less than 1%. (While inclusion for participation in ATHN Transcends lists \\\u003C5% FVIII activity, this proposed module will limit enrollment to people with FVIII activity levels of \\\u003C1%.) Other severities may be included per ATHN Transcends PI approval.\n3. \\\u003C18 years of age.\n4. No history of a confirmed, positive FVIII inhibitor.\n5. Sex assigned at birth of male, female, or intersex.\n6. Participants should have no more than three (3) exposure days of blood products (fresh frozen plasma, cryoprecipitate, or platelets), no more than three (3) doses of any FVIII concentrate other than efanesoctocog alfa, and up to three (3) doses of efanesoctocog alfa prior to enrollment.\n7. Site PI confirmed all inclusion criteria has been met.\n\nExclusion criteria:\n\n1. Not meeting all the inclusion criteria; confirmed by site PI.\n2. Any exposure to blood products or FVIII replacement products except as described in the inclusion criteria.\n3. History of positive inhibitor testing.\n4. History of hypersensitivity reactions associated with efanesoctocog alfa administration.\n5. Other coagulation disorder(s) in addition to Hemophilia A.\n6. Any concurrent clinically significant major disease such as cancer that, in the opinion of the investigator, would make the participant unsuitable for enrollment.\n7. Concurrent systemic treatment with chemotherapy and\u002For other immunosuppressant medications. Use of corticosteroids for the treatment of asthma or management of acute allergic or otherwise life-threatening episodes is allowed except for systemic corticosteroid treatment given to children daily or on an alternate day schedule at \\> 2 mg\u002Fkg\u002Fday of prednisone or its equivalent or \\> 20 mg\u002Fday if the duration is longer than 14 days.\n8. Enrollment in a concurrent clinical interventional drug study.\n9. Intake of an Investigational Medicinal Product within three (3) months prior to inclusion in this study.\n10. Inability to comply with study requirements.\n11. Other, unspecified reasons that, in the investigator's opinion, make the participant unsuitable for enrollment.\n\nHemophilia Natural History Arm\n\nInclusion Criteria\n\n1. Congenital or acquired hemophilia A or B of any severity with or without inhibitors receiving a current therapy, a non-factor product, or for whom use of a non-factor product is a possibility, OR\n2. Females of any age, with confirmed congenital hemophilia A or B carrier status with genetic mutational analysis and any factor level.\n\nExclusion Criteria\n\n1. Presence of any known bleeding disorder other than congenital hemophilia A or B\n2. Presence of concurrent hemophilia and a second hemostatic defect (low von Willebrand Factor (vWF) without vWD diagnosis is not excluded)\n3. Unable or unwilling to comply with the study arm protocol.\n\nNonacog beta pegol (Rebinyn®) Module\n\nInclusion Criteria:\n\n1. Has provided signed written consent for the nonacog beta pegol (Rebinyn®)Module before any study-related activities.\n2. Male participants, at any age with hemophilia B, naïve or minimally exposed (up to 3 EDs) to nonacog beta pegol treatment at time of study enrollment. Additional doses may be allowable per ATHN Transcends PI approval.\n3. Decision to initiate continuous prophylaxis treatment with commercially available nonacog beta pegol has been made by the participant(s)\u002FLegally Authorized Representative(s) (LAR(s)) and the treating physician before and independently from the decision to include the participant in this study.\n\nExclusion Criteria:\n\n1. Previous participation in this study. Participation is defined as having given informed consent in this study.\n2. Mental incapacity, unwillingness or language barriers precluding adequate understanding or cooperation, including a diagnosis or suspicion of attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD) per the discretion of the Principal Investigator.\n3. Known or suspected hypersensitivity to nonacog beta pegol or related products.\n4. Clinical suspicion or presence of FIX inhibitor at time of inclusion.\n5. Inability or unwillingness to undergo neurological assessment\u002Fstructured developmental history.\n\nEmicizumab (Hemlibra®) Module\n\nInclusion Criteria:\n\n1. Participant currently treated with emicizumab (Hemlibra®)\n2. Currently enrolled in the Hemophilia Natural History Arm of ATHN Transcends\n\nExclusion Criteria:\n\n1\\. Unable or unwilling to comply with the protocol\n\nDistress Module\n\nInclusion Criteria:\n\n1. Congenital hemophilia A or B of any severity with or without inhibitors receiving a current therapy, a non-factor product, or for whom use of a non-factor product is a possibility\n2. Age 18 years of age or older\n3. English speaking\n\nExclusion Criteria:\n\n1. Presence of any known bleeding disorder other than congenital hemophilia A or B;\n2. Presence of concurrent hemophilia and a second hemostatic defect (low von Willebrand Factor (vWF) without vWD diagnosis is not excluded); and\n3. Unable or unwilling to comply with the study arm protocol\n\nHemophilia Gene Therapy Outcomes Arm\n\nInclusion Criteria\n\n1. Hemophilia A or B of any severity with or without inhibitors having received or will receive a hemophilia gene transfer product in the next 6 months.\n2. Age 18 years and older.\n3. Able to give informed consent.\n\nExclusion Criteria None\n\nEtranacogene dezaparvovec (HEMGENIX®) Module\n\nInclusion Criteria:\n\nEtranacogene dezaparvovec (HEMGENIX®) Cohort\n\n1. Age 18 years of age or older\n2. Treatment with commercial etranacogene dezaparvovec (HEMGENIX®)\n3. Have provided signed written informed consent within 3 months before or within 6 months after etranacogene dezaparvovec (HEMGENIX®) treatment, or within 6 months of when the study is initiated at the treating site.\n\nFIX Prophylaxis Cohort\n\n1. Age 18 years of age or older\n2. Treatment with FIX prophylaxis therapy\n3. Has provided signed written consent at any time for ATHN Transcends Study\n\nExclusion Criteria, both cohorts:\n\n1\\. Have been treated with etranacogene dezaparvovec in a clinical trial prior to commercial availability. These patients are still eligible for enrollment in the Gene Therapy Outcomes Arm, and their data may be collected for separate analysis.\n\nCongenital Platelet Disorders Arm\n\nInclusion Criteria\n\n1. Platelet adhesion defect\n\n   1. Bernard Soulier syndrome (Defective GPIb-IX-V receptor, impaired adhesion to vWF)\n   2. Velocardio-facial syndrome\u002FDiGeorge syndrome (Defective GPIb-IX-V receptor)\n   3. Platelet type vWD (Defective GPIb-IX-V, gain of function interaction between vWF-GP1bα)\n2. Platelet aggregation defect\n\n   1. Glanzmann thrombasthenia (Defective integrin αIIbβ3 (GPIIb\u002FIIIa)\n   2. Platelet aggregation defect, NOS\n3. Agonist receptor defects\n\n   1. Epinephrine\n   2. ADP\n   3. Collagen\n   4. Thromboxane A2\n4. Platelet signaling defects\n\n   1. Cyclooxygenase deficiency (PTGS1 mutation)\n   2. Phospholipase A2 deficiency\n   3. Thromboxane synthase deficiency (TBXAS1 mutation)\n   4. G protein activation defect (GNAS mutation)\n   5. Scott syndrome (defect in phosphatidyl serine translocation)\n5. Platelet Granule disorders\n\n   1. Dense granule storage pool disorder\n\n      * Hermansky Pudlak syndrome\n      * Chediak Higashi syndrome\n      * Griscelli syndrome\n   2. Alpha granule storage pool disorder\n\n      * Grey platelet syndrome\n      * Arthrogryposis-Renal Dysfunction-Cholestasis (ARC) syndrome\n      * Quebec platelet disorder\n      * Paris-Trousseau syndrome\n   3. Combined alpha delta granule deficiency\n6. Platelet cytoskeletal structure defects\n\n   1. Wiskott Aldrich syndrome\n   2. MYH9 associated disorders (myosin heavy chain)\n\n      * May Hegglin syndrome\n      * Fechtner syndrome\n      * Sebastian syndrome\n      * Epstein syndrome\n   3. Other mutations\n\n      * FLNA mutations (Filamin)\n      * DIAPH1 (Actin and microtubules)\n      * ACTN1 (alpha actinin)\n      * TPM4 (tropomyosin)\n      * TUBB1 (beta tubulin)\n7. Other Congenital thrombocytopenias\n\n   1. Familial platelet disorders and predisposition to AML (RUNX1)\n   2. X linked thrombocytopenia with dyserythropoiesis (GATA1)\n   3. Congenital amegakaryocytic thrombocytopenia (MPL)\n\nExclusion Criteria\n\n1. Diagnosis of von Willebrand Disease (Meeting the definition of vWD or low vWF per most recent international guidelines)\n2. Diagnosis of Hemophilia A or Hemophilia B (Factor VIII or IX ≤ 40%)\n\nGlanzmann Thrombasthenia (GT) Module\n\nInclusion Criteria\n\n1. Participant has signed the informed consent\u002Fassent form\n2. Participant has flow cytometry or aggregometry or genetics confirmed GT\n3. Participant is willing to perform study procedures, including daily bleed tracking for 3 months and further if requested\n4. Participants are 2 years or older at time of consent\n\nExclusion Criteria None","ALL",{"count":1159,"type":1160},3000,"ESTIMATED","OBSERVATIONAL","In parallel with the growth of ATHN's clinical studies, the number of new therapies for all blood disorders is increasing significantly. Some of the recently FDA-approved therapies for congenital and acquired hematologic conditions have not yet demonstrated long-term safety and effectiveness beyond the pivotal trials that led to their approval. In addition, results from well controlled, pivotal studies often cannot be replicated once a therapy has been approved for general use.2,3,4,5\n\nIn 2019 alone, the FDA has issued approvals for 24 new therapies for congenital and acquired hematologic conditions.6 In addition, almost 10,000 new studies for hematologic diseases are currently registered on www.clinicaltrials.gov.7\n\nWith this increase in potential new therapies possible, it is imperative that clinicians and clinical researchers in the field of non-neoplastic hematology have a uniform, secure, unbiased, and enduring method to collect long-term safety and efficacy data. As emphasized in a recently published review, accurate, uniform and quality national data collection is critical in clinical research, particularly for longitudinal cohort studies covering a lifetime of biologic risk.8",[1164,1165,1166,9,1167,1168,1169,1170,1171,1172,1173,1174,1175],"Hematologic Disorder","Bleeding Disorder","Connective Tissue Disorder","Thrombosis","Von Willebrand Diseases","Thrombophilia","Rare Bleeding Disorder","Platelet Disorder","Factor IX Deficiency","Factor VIII Deficiency","Thalassemia","Sickle Cell Disease","2026-07-10",{"date":1178,"type":1179},"2026-07-13","ACTUAL",{"date":1181,"type":1179},"2020-09-30",{"date":1183,"type":1160},"2035-12",{"name":5,"class":6},71]