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\u5373\u4f7f\u60a8\u6216\u60a8\u7684\u89aa\u4eba\u4e0d\u5728\u8a66\u9a57\/\u7814\u7a76\u4e2d\u5fc3\u9644\u8fd1\uff0c\u6211\u5011\u4e5f\u9f13\u52f5\u60a8\u6216\u4e3b\u6cbb\u91ab\u751f\u5728\u6cbb\u7642\u524d\u8207\u53c3\u8207\u8a66\u9a57\/\u7814\u7a76\u7684\u7814\u7a76\u4eba\u54e1\u4ea4\u8ac7\u3002\u9019\u5c07\u4f7f\u60a8\u53d7\u76ca\u65bc\u5feb\u901f\u8b8a\u5316\u7684 ECD \u6cbb\u7642\u9818\u57df\u7684\u4e00\u4e9b\u9818\u5148\u7814\u7a76\u3002 <\/p>\n
ECD \u7814\u7a76\u5305\u62ec\u89c0\u5bdf\u6027\u7814\u7a76\u548c\u81e8\u5e8a\u8a66\u9a57\u3002\u89c0\u5bdf\u6027\u7814\u7a76\u4e0d\u6e2c\u8a66\u6cbb\u7642\u65b9\u6cd5\uff0c\u800c\u662f\u89c0\u5bdf\u4e00\u7a2e\u60c5\u6cc1\u4ee5\u63d0\u51fa\u4e00\u500b\u5047\u8a2d\uff0c\u7136\u5f8c\u53ef\u4ee5\u901a\u904e\u81e8\u5e8a\u8a66\u9a57\u9032\u884c\u6e2c\u8a66\u3002\u7814\u7a76\u548c\u81e8\u5e8a\u8a66\u9a57\u90fd\u9700\u8981\u60a3\u8005\u53c3\u8207\u9032\u884c\u5fc5\u8981\u7684\u7814\u7a76\uff0c\u4ee5\u77ad\u89e3\u66f4\u591a\u95dc\u65bc ECD\u7684\u8cc7\u8a0a\u3002 <\/p>\n
\u76ee\u524d\u6709\u91dd\u5c0d ECD \u6cbb\u7642\u7684\u81e8\u5e8a\u8a66\u9a57\u958b\u653e\u3002\u60a3\u8005\u53c3\u52a0\u8a66\u9a57\u7684\u597d\u8655\u5305\u62ec\uff1a <\/p>\n
\u7576\u60a3\u8005\u53c3\u52a0\u8a66\u9a57\u6642\uff0c\u5c0d\u6574\u500b ECD \u793e\u5340\u7684\u597d\u8655\u5305\u62ec\uff1a<\/p>\n
\u7f8e\u570b\u7684\u65b0\u846f\u5728\u81e8\u5e8a\u8a66\u9a57\uff08\u7814\u7a76\uff09\u4e2d\u9032\u884c\u6e2c\u8a66\uff0c\u4ee5\u78ba\u5b9a\u5b83\u5011\u662f\u5b89\u5168\u7684\uff0c\u53ef\u4ee5\u6210\u529f\u6cbb\u7642\u7279\u5b9a\u7684\u75be\u75c5\uff0c\u4ee5\u53ca\u5efa\u8b70\u7684\u5291\u91cf\u61c9\u8a72\u662f\u591a\u5c11\u3002\u7f8e\u570b\u98df\u54c1\u548c\u85e5\u7269\u7ba1\u7406\u5c40 \uff08FDA\uff09 \u5be9\u67e5\u81e8\u5e8a\u8a66\u9a57\u7d50\u679c\uff0c\u4ee5\u78ba\u5b9a\u8a72\u85e5\u7269\u662f\u5426\u662f\u4e00\u7a2e\u5b89\u5168\u6709\u6548\u7684\u6cbb\u7642\u65b9\u6cd5\u3002\u7576 FDA \u6279\u51c6\u91dd\u5c0d\u7279\u5b9a\u75be\u75c5\u7684\u6cbb\u7642\u65b9\u6cd5\u6642\uff0c\u5927\u591a\u6578\u60a3\u8005\u66f4\u5bb9\u6613\u7372\u5f97\u8a72\u6cbb\u7642\u3002\u5176\u4ed6\u570b\u5bb6\u4e5f\u4f7f\u7528\u985e\u4f3c\u7684\u6d41\u7a0b\u3002 <\/p>\n
\u81e8\u5e8a\u8a66\u9a57\u662f\u63a8\u9032\u91ab\u5b78\u77e5\u8b58\u548c\u60a3\u8005\u8b77\u7406\u7684\u95dc\u9375\u7814\u7a76\u5de5\u5177\u3002 ECD \u81e8\u5e8a\u8a66\u9a57\u78ba\u5b9a\u6cbb\u7642\u5c0d ECD \u60a3\u8005\u662f\u5426\u5b89\u5168\u6709\u6548\u3002\u81e8\u5e8a\u8a66\u9a57\u70ba\u91ab\u7642\u4fdd\u5065\u6c7a\u7b56\u63d0\u4f9b\u4e86\u6700\u4f73\u6578\u64da\u3002 <\/p>\n
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\u5728\u81e8\u5e8a\u8a66\u9a57\u671f\u9593\uff0c\u91ab\u751f\u3001\u8b77\u58eb\u3001\u793e\u6703\u5de5\u4f5c\u8005\u548c\u5176\u4ed6\u91ab\u7642\u4fdd\u5065\u63d0\u4f9b\u8005\u53ef\u80fd\u662f\u60a8\u7684\u6cbb\u7642\u5718\u968a\u7684\u4e00\u90e8\u5206\u3002\u4ed6\u5011\u5c07\u5bc6\u5207\u76e3\u6e2c\u60a8\u7684\u5065\u5eb7\u60c5\u6cc1\u3002\u8207\u6c92\u6709\u53c3\u52a0\u81e8\u5e8a\u8a66\u9a57\u76f8\u6bd4\uff0c\u60a8\u53ef\u80fd\u6709\u66f4\u591a\u7684\u6e2c\u8a66\u548c\u9ad4\u6aa2\u3002\u6709\u4e9b\u4eba\u9700\u8981\u65c5\u884c\u6216\u4f4f\u9662\u624d\u80fd\u53c3\u52a0\u81e8\u5e8a\u8a66\u9a57\u3002 ECD \u81e8\u5e8a\u8a66\u9a57\u76ee\u524d\u6b63\u5728\u7f8e\u570b\u548c\u6b50\u6d32\u7684\u91ab\u7642\u4e2d\u5fc3\u548c\u91ab\u751f\u8fa6\u516c\u5ba4\u9032\u884c\u3002 <\/p>\n
\u53c3\u52a0\u81e8\u5e8a\u8a66\u9a57\u6709\u5f88\u591a\u597d\u8655\u3002\u4f8b\u5982\uff0c\u60a8\u53ef\u80fd\u6703\u5728\u65b0\u7684\u6cbb\u7642\u65b9\u6cd5\u5ee3\u6cdb\u4f7f\u7528\u4e4b\u524d\u7372\u5f97\u5b83\u5011\u3002\u5982\u679c\u4e00\u7a2e\u65b0\u7684\u6cbb\u7642\u65b9\u6cd5\u88ab\u8b49\u660e\u6709\u6548\uff0c\u4e26\u4e14\u60a8\u662f\u63a5\u53d7\u5b83\u7684\u7fa4\u9ad4\u4e4b\u4e00\uff0c\u90a3\u9ebc\u60a8\u53ef\u80fd\u662f\u7b2c\u4e00\u6279\u53d7\u76ca\u8005\u4e4b\u4e00\u3002\u60a8\u9084\u5c07\u7372\u5f97\u91ab\u7642\u4fdd\u5065\u63d0\u4f9b\u8005\u5718\u968a\u7684\u652f\u6301\uff0c\u4ed6\u5011\u53ef\u80fd\u6703\u5bc6\u5207\u76e3\u6e2c\u60a8\u7684\u5065\u5eb7\u60c5\u6cc1\u3002 <\/p>\n
\u5373\u4f7f\u60a8\u6c92\u6709\u76f4\u63a5\u5f9e\u60a8\u53c3\u52a0\u7684\u81e8\u5e8a\u8a66\u9a57\u7684\u7d50\u679c\u4e2d\u53d7\u76ca\uff0c\u6536\u96c6\u5230\u7684\u8cc7\u8a0a\u4e5f\u53ef\u4ee5\u8aac\u660e\u4ed6\u4eba\u4e26\u589e\u52a0\u79d1\u5b78\u77e5\u8b58\u3002\u53c3\u52a0\u81e8\u5e8a\u8a66\u9a57\u7684\u4eba\u5c0d\u65bc\u6539\u5584\u91ab\u7642\u4fdd\u5065\u7684\u904e\u7a0b\u81f3\u95dc\u91cd\u8981\u3002\u8a31\u591a\u4eba\u505a\u5fd7\u9858\u8005\u662f\u56e0\u70ba\u4ed6\u5011\u60f3\u8aac\u660e\u4ed6\u4eba\u3002 <\/p>\n
\u5728\u60a8\u540c\u610f\u53c3\u52a0\u8a66\u9a57\u4e4b\u524d\uff0c\u60a8\u61c9\u8a72\u77ad\u89e3\u4efb\u4f55\u81e8\u5e8a\u8a66\u9a57\u7684\u98a8\u96aa\u548c\u76ca\u8655\u3002\u8207\u60a8\u7684\u91ab\u751f\u8a0e\u8ad6\u60a8\u611f\u8208\u8da3\u7684\u5177\u9ad4\u8a66\u9a57\u3002 <\/p>\n
\u4e00\u65e6 FDA \u5c0d\u85e5\u7269\u6709\u6548\u4e14\u5b89\u5168\u611f\u5230\u6eff\u610f\uff0c\u5b83\u548c\u88fd\u85e5\u5546\u5c31\u6703\u5275\u5efa\u4e00\u4efd\u7a31\u70ba\u85e5\u7269\u6a19\u7c64\u7684\u5831\u544a\u3002\u8a72\u5831\u544a\u63d0\u4f9b\u4e86\u6709\u95dc\u85e5\u7269\u7684\u975e\u5e38\u5177\u9ad4\u7684\u8cc7\u8a0a\u3002FDA \u6279\u51c6\u5831\u544a\uff08\u6a19\u7c64\uff09\uff0c\u8a72\u5831\u544a\u70ba\u958b\u5177\u6216\u92b7\u552e\u85e5\u7269\u7684\u885b\u751f\u5c08\u696d\u4eba\u54e1\u63d0\u4f9b\u5fc5\u8981\u7684\u8cc7\u8a0a\u3002 <\/p>\n
\u5728\u7f8e\u570b\uff0c\u7576\u85e5\u7269\u7684\u4f7f\u7528\u65b9\u5f0f\u8207 FDA \u6279\u51c6\u7684\u85e5\u7269\u6a19\u7c64\u4e2d\u63cf\u8ff0\u7684\u4e0d\u540c\u6642\uff0c\u7a31\u70ba\u300c\u8d85\u8aaa\u660e\u66f8\u300d\u4f7f\u7528\u3002\u9019\u53ef\u80fd\u610f\u5473\u8457\u8a72\u85e5\u7269\u662f\uff1a <\/p>\n
\u4e00\u4e9b ECD \u6cbb\u7642\u5df2\u7372\u5f97 FDA \u6279\u51c6\uff0c\u800c\u53e6\u4e00\u4e9b\u5247\u672a\u7372\u5f97\u6279\u51c6\u3002\u90a3\u4e9b\u672a\u7372\u51c6\u7528\u65bc ECD \u7684\u85e5\u7269\u88ab\u8996\u70ba\u8d85\u8aaa\u660e\u66f8\u4f7f\u7528\u3002\u8d85\u8aaa\u660e\u66f8 ECD \u6cbb\u7642\u662f\u6307\u5df2\u6279\u51c6\u7528\u65bc\u5176\u4ed6\u75be\u75c5\u4f46\u672a\u7372\u51c6\u7528\u65bc ECD \u6cbb\u7642\u7684\u6cbb\u7642\u65b9\u6cd5\u3002\u9019\u5728\u7f8e\u570b\u548c\u8a31\u591a\u5176\u4ed6\u570b\u5bb6\/\u5730\u5340\u662f\u5408\u6cd5\u7684\u3002\u8d85\u8aaa\u660e\u66f8\u7528\u85e5\u5728\u7f55\u898b\u75c5\u7684\u6cbb\u7642\u4e2d\u5f88\u5e38\u898b\u3002 <\/p>\n
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\u5118\u7ba1\u5982\u6b64\uff0c\u5065\u5eb7\u4fdd\u96aa\u8986\u84cb\u6cd5\u5f8b\u6cd5\u898f\u4ecd\u7136\u5f88\u8907\u96dc\u3002\u5982\u679c\u60a8\u7684\u91ab\u751f\u6b63\u5728\u8003\u616e\u4f7f\u7528\u8d85\u8aaa\u660e\u66f8\u7528\u85e5\uff0c\u60a8\u548c\u60a8\u7684\u91ab\u751f\u61c9\u8a72\u4ed4\u7d30\u6aa2\u67e5\u60a8\u7684\u5065\u5eb7\u8a08\u5283\u7684\u627f\u4fdd\u7bc4\u570d\u3002\u5982\u679c\u60a8\u88ab\u62d2\u7d55\u627f\u4fdd\uff0c\u91ab\u751f\u5411\u4fdd\u96aa\u516c\u53f8\u767c\u9001\u540c\u884c\u8a55\u5be9\u671f\u520a\u6587\u7ae0\u7684\u526f\u672c\u6216\u5176\u4ed6\u652f\u63f4\u8d85\u8aaa\u660e\u66f8\u4f7f\u7528\u7684\u53d7\u4eba\u5c0a\u656c\u7684\u4f86\u6e90\u53ef\u80fd\u6703\u6709\u6240\u8aac\u660e\u3002 ECD \u806f\u76df\u5f88\u6a02\u610f\u5e6b\u52a9\u91ab\u7642\u5718\u968a\u89e3\u6c7a\u9019\u500b\u554f\u984c\u3002\uff08\u8acb\u53c3\u95b1\u6211\u5011\u7684 \u9801\u9762 \u63d0\u4ea4\u4ed8\u6b3e\u4eba\u4e0a\u8a34<\/a>\u3002 <\/p>\n [\/et_pb_text][et_pb_text module_id=”trials” _builder_version=”4.27.4″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" [et_pb_dmb_breadcrumbs _builde […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-55931","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages\/55931","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=55931"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages\/55931\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=55931"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\u7576\u524d\u958b\u653e\u7684 ECD \u7814\u7a76\u548c\u8a66\u9a57<\/h2>\n
\n\n
\n\t #<\/strong><\/th> NCT#<\/strong><\/th> Name of Study<\/strong><\/th> Purpose<\/strong><\/th> Type of Study<\/strong><\/th> Selection<\/strong><\/th> Age Requirement<\/strong><\/th> Care Center \/ Contact<\/strong><\/th>\n<\/tr>\n<\/thead>\n\n \n\t 1<\/td> NCT05915208<\/a><\/td> Histiocytic Disorder Follow-up Study<\/td> To understand the health problems experienced by individuals with ECD and other histiocytic disorders.<\/td> Surveys only
\nObservational
\nRetrospective<\/td>English survey completion (online, on phone, or on paper) from the comfort of your home.<\/td> 18 \u2013 89 years old<\/td> University of Alabama at Birmingham
\nBirmingham, AL USA
\nGaurav Goyal, MD
\nhistio@uabmc.edu
\n+1-866-438-1640<\/td>\n<\/tr>\n\n\t 2<\/td> NCT03329274<\/a><\/td> Registry for Patients with Erdheim-Chester Disease and Other Histiocytoses<\/td> Determine what kinds of health problems are caused by histiocytosis, what happens as a result of different treatments, and how ECD affects people's lives, their feelings and their attitudes.<\/td> Surveys & medical records
\nObservational
\nProspective<\/td>Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm<\/td> 18 years and older<\/td> MSKCC
\nNew York City, NY USA
\nEli Diamond, MD
\ndiamone1@mskcc.org
\n+1- 212-610-0243<\/td>\n<\/tr>\n\n\t 3<\/td> NCT03990428<\/a><\/td> Supportive Care Needs of Caregivers of People with Erdheim-Chester Disease and Other Histiocytic Diseases<\/td> Determine the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases<\/td> Online surveys
\nObservational
\nProspective<\/td>Self id\u2019d unpaid support person for ECD, LCH, RDD, or JXG patient<\/td> 18 years and older<\/td> MSKCC
\nNew York City, NY USA
\nEli Diamond, MD
\ndiamone1@mskcc.org
\n+1- 212-610-0243<\/td>\n<\/tr>\n\n\t 4<\/td> NCT03017820<\/a><\/td> VSV-hIFNbeta-NIS in Treating Patients With Relapsed or Refractory Multiple Myeloma, Acute Myeloid Leukemia or Lymphoma<\/td> Studies the best dose and side effects of recombinant vesicular stomatitis virus carrying the human NIS and IFN beta genes as a way to to kill cancer cells without damaging normal cells. For patients whose prior treatment did not help<\/td> Clinical Trial
\nInterventional Treatment<\/td>Relapsed\/ refractory to prior ECD treatments<\/td> 18 years and older<\/td> Mayo Clinic in Rochester
\nRochester, MN USA
\nNora Bennani, MD
\nRonald Go, MD
\ngo.ronald@mayo.edu<\/td>\n<\/tr>\n\n\t 5<\/td> NCT04640779<\/a><\/td> Low-Dose Selinexor and Choline Salicylate for Non-Hodgkin or Hodgkin Lymphoma, Histiocytic\/Dendritic Cell Neoplasm, or Relapsed or Refractory Multiple Myeloma<\/td> Evaluates the side effects and best dose of choline salicylate given together for patients whose prior treatment did not help.<\/td> Clinical Trial
\nInterventional Treatment<\/td>Relapsed\/ refractory to prior ECD treatments<\/td> 18 years and older<\/td> Mayo Clinic in Rochester
\nRochester, MN USA
\nJonas Paludo, M.D.
\nRonald Go, MD
\ngo.ronald@mayo.edu<\/td>\n<\/tr>\n\n\t 6<\/td> NCT06153173<\/a><\/td> Mirdametinib in Histiocytic Disorders<\/td> Determine if treatment with mirdametinib in patients with histiocytic disorders will be better than current treatments and with fewer side effects.<\/td> Clinical Trial
\nInterventional Treatment<\/td>Diagnosis of histiocytic neoplasm confirmed by a Cincinnati Children's Hospital pathologist. Exception for those with isolated pituitary\/CNS disease where biopsy is not feasible.<\/td> 2 years and older<\/td> Children's Hospital Medical Center
\nCincinnati, Ohio USA
\nMonica Trapp
\nmonica.trapp@cchmc.org
\nAshish Kumar, MD, PhD
\n+1-513-803-8574<\/td>\n<\/tr>\n\n\t 7<\/td> n\/a<\/td> LCH and Vitamin D<\/td> To investigate changes in the skeletal related quality of life (QoL) among adult LCH patients following a 3-month cholecalciferol supplementation to achieve or maintain 25(OH)D levels \u2265 30 ng\/ml (75 nmol\/L).<\/td> Clinical Trial
\nInterventional Adjunct Therapy<\/td>Histiocytosis diagnosis<\/td> All ages?<\/td> 251 Hellenic Air Force & VA General Hospital
\nGreece
\nMakras Polyzois, MD
\ninfo@adultlch.gr
\n30-2107463606<\/td>\n<\/tr>\n\n\t 8<\/td> NCT06411821<\/a><\/td> Phase 2 Trial of Ulixertinib for Patients with Histiocytic Neoplasms<\/td> Clinical trial of oral ERK inhibitor<\/td> Clinical Trial
\nInterventional Treatment<\/td>Any histiocytic neoplasm<\/td> 18 years and older<\/td> MSKCC
\nNYC, NY USA
\nEli Diamond, MD
\ndiamone1@mskcc.org<\/td>\n<\/tr>\n\n\t 9<\/td> NCT04079179<\/a><\/td> Cobimetinib in Refractory Langerhans Cell Histiocytosis (LCH), and Other Histiocytic Disorders (NACHO-COBI)<\/td> Study of cobimetinib in children and adults with LCH and other histiocytic diorders.<\/td> Clinical Trial
\nInterventional Treatment<\/td>Relapsed\/ refractory to prior ECD treatments<\/td> 6 months and older<\/td> NACHO (Baltimore, Dallas, DC, Houston, Madison, Memphis, Orange, ??)
\nTexas Children\u2019s Hospital
\nHouston, TX USA
\nCarl Allen, MD
\nceallen@texaschildrens.org
\n+1-832-822-4242<\/td>\n<\/tr>\n\n\t 10<\/td> NCT05768178<\/a><\/td> Vemurafenib in Combination With Cobimetinib in Adult Patients With BRAF Positive Cancers.<\/td> Evaluate the efficacy of vemurafenib and cobimetinib in adult patients with rare cancers with BRAF V600 mutations.<\/td> Clinical Trial
\nInterventional Treatment<\/td>BRAF V600E<\/td> 16 years and older<\/td> Multiple UK Hospitals
\nIncluding Leeds General Infirmary
\nLeeds, UK
\nMartin Elliott, MBBS
\nMartin.elliott1@nhs.net
\n0113 392 8779<\/td>\n<\/tr>\n\n\t 11<\/td> NCT02925234<\/a><\/td> The Drug Rediscovery Protocol (DRUP Trial) (DRUP)<\/td> A drug-access program, in which patients are treated with registered targeted therapy matched to their molecular tumor profile.<\/td> Clinical Trial
\n<\/td>Histologically-proven disease<\/td> 18 years and older<\/td> Erasmus MC
\nRotterdam, Netherlands
\nM.J.A. de Jonge, MD, PhD
\nE.E. Voest, prof.
\n0031205129111
\nDRUP@nki.nl
\n <\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n<\/div>\n