{"id":2666,"date":"2018-03-22T18:05:19","date_gmt":"2018-03-22T18:05:19","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?page_id=2666"},"modified":"2026-06-30T17:50:15","modified_gmt":"2026-06-30T22:50:15","slug":"registers-en-enquetes","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/nl\/registries-surveys\/","title":{"rendered":"Registers en enqu\u00eates"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;15px||15px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;\/contact-us\/&#8221; button_text=&#8221;Contact Us&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||0px|0px|false|false&#8221; global_colors_info=&#8221;{}&#8221; locked=&#8221;off&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F2F2F2&#8243; custom_padding=&#8221;40px|30px|40px|30px|true|false&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; box_shadow_style=&#8221;preset2&#8243; box_shadow_vertical=&#8221;4px&#8221; box_shadow_blur=&#8221;8px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;-10px||||false|false&#8221; custom_padding=&#8221;0px||||false|false&#8221; hover_enabled=&#8221;0&#8243; border_radii=&#8221;on|20px|20px|20px|20px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;#adadad&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<div class=\"ecd-video-embed\">\n<div class=\"ecd-video-wrapper\">\n<iframe loading=\"lazy\" width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/videoseries?si=c4plR-g5arD5kBDz&amp;list=PLd9i5JBvapc729BhYDkdSqc2h2ichWGYU\" title=\"YouTube video player\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]The ECDGA YouTube playlist, &#8220;Research into ECD by ECDGA,&#8221; includes 40 videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, research, and advances in patient care.[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc729BhYDkdSqc2h2ichWGYU&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Watch Playlist&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;16px&#8221; button_bg_color=&#8221;#C02E43&#8243; button_border_radius=&#8221;8px&#8221; button_font=&#8221;|600|||||||&#8221; button_use_icon=&#8221;off&#8221; transform_translate_linked__hover=&#8221;off&#8221; custom_padding=&#8221;16px|30px|16px|30px|true|true&#8221; hover_enabled=&#8221;0&#8243; custom_css_main_element=&#8221;width: 100%;||text-align: center;&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; transform_styles__hover_enabled=&#8221;on|hover&#8221; transform_scale__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover_enabled=&#8221;on|hover&#8221; transform_rotate__hover_enabled=&#8221;on|desktop&#8221; transform_skew__hover_enabled=&#8221;on|desktop&#8221; transform_origin__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover=&#8221;0px|-3px&#8221; button_text_color__hover_enabled=&#8221;on|hover&#8221; button_text_color__hover=&#8221;#FFFFFF&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.7&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||18px|||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<h2>ECD Patient Registry<\/h2>\n<p><strong>ECD research needs your help!\u202f An Erdheim-Chester Disease patient registry database has been developed.\u202f Now we need your data to make it useful! <\/strong><\/p>\n<p>The ECD Patient Registry is a medical database collecting information and\/or samples from patients diagnosed with ECD.\u00a0 This data will be used to help scientists advance knowledge of ECD and its treatment.\u00a0 Read about the registry in detail below, including how to enroll.<\/p>\n<p>Please note that by joining the ECD Patient Registry, you are NOT joining the ECD Global Alliance membership!\u00a0 If you are not yet a member of the ECDGA, please also join the ECDGA by following this link below. If you are already a member, please consider also joining the Registry.[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/join&#8221; button_text=&#8221;Join the ECD Global Alliance&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||15px|||&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; hover_enabled=&#8221;0&#8243; sticky_enabled=&#8221;0&#8243;][et_pb_column _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; type=&#8221;1_2&#8243;][et_pb_image src=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2014\/11\/shutterstock_113775325.png&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; sticky_enabled=&#8221;0&#8243; force_fullwidth=&#8221;on&#8221;][\/et_pb_image][\/et_pb_column][et_pb_column _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; type=&#8221;1_2&#8243;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||11px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>To find out if you are eligible to participate in the ECD Patient Registry, follow this link.\u00a0<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/redcap.mskcc.org\/surveys\/?s=JXWLJMMXFD&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;ECD Patient Registry&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||5px|||&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><a class=\"cont-us-btn\" href=\"https:\/\/redcap.mskcc.org\/surveys\/?s=JXWLJMMXFD\" target=\"_blank\" rel=\"noopener noreferrer\"><\/a><\/p>\n<p>Read the most recent data published from the registry collection:<strong> <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/01\/2020-Registry-Update-1.pdf\" target=\"_blank\" rel=\"noopener\">2020 Registry Update<\/a><\/strong><\/p>\n<p>In late 2018, the registry resulted in the following symptom-assessment article.\u00a0 Findings conclude that patients with ECD possess widely varied and unappreciated symptomatology. <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/01\/symptoms-Diamond-ECD-SS-Blood-Advances.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row admin_label=&#8221;row&#8221; _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_accordion open_toggle_text_color=&#8221;#FFFFFF&#8221; open_toggle_background_color=&#8221;#F2F2F2&#8243; closed_toggle_background_color=&#8221;#35A4BB&#8221; toggle_icon=&#8221;&#x33;||divi||400&#8243; icon_color=&#8221;#FFFFFF&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; toggle_text_color=&#8221;#FFFFFF&#8221; db_closeable=&#8221;on&#8221; db_initial_state=&#8221;all_closed&#8221; border_radii=&#8221;on|6px|6px|6px|6px&#8221; border_width_all=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_accordion_item title=&#8221;About the Registry&#8221; open=&#8221;on&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/11\/mskcc.png\" rel=\"attachment wp-att-3117\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-full wp-image-3117\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/11\/mskcc.png\" alt=\"mskcc\" width=\"236\" height=\"227\" \/><\/a><\/p>\n<p>The Erdheim-Chester Disease Registry, led by Memorial Sloan Kettering Cancer Center (MSK), unites leading researchers with people like you who are interested in taking part in building an informational database. The focus of this registry will be to help scientists advance our knowledge of ECD, how it affects the lives of patients, and how ECD treatments work. \u00a0The ultimate goal \u2013 a cure!<\/p>\n<p>Erdheim-Chester disease (ECD) is a rare disease that affects about 1,000 people worldwide. Because ECD is so rare, we are creating a patient registry to help gather information on ECD. A medical registry is a systematic collection of a clearly defined set of health and demographic data for patients with specific health problems, held in a central database for a predefined purpose. In the case of the ECD Registry, it will serve to increase knowledge about the condition and how it may be treated.<\/p>\n<p>The focus is to understand more about what kinds of health problems are caused by ECD, what happens as a result of different treatments for ECD, and how ECD affects people\u2019s feelings and attitudes. We also want to learn how these things change over time for people with ECD. To try to figure this out, doctors would like to collect information about people who have Erdheim-Chester disease and how they are treated for the disease.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;Why join?&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>Scientists have made tremendous progress in the fight against the disease in just the past decade, and new studies launch every year.\u00a0But researchers can&#8217;t do the work alone; they need information from people like you to conduct their research.<\/p>\n<p>Memorial Sloan Kettering Cancer Center (MSK) serves as the trusted custodian of this centralized database and storage of samples. This data will be available to investigators studying the disease. The registry is designed to answer questions and provide information for investigators to find effective treatments.<\/p>\n<p>The ECDGA is committed to continuing the registry\u2019s management and funding so we can continue the growth of invaluable information this database will provide to the community.<\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;How does the Registry work?&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>If you would like to participate in the Registry, the MSK team will request the following information to be sent from your doctor.<\/p>\n<ul>\n<li>Medical reports (doctor&#8217;s notes, laboratory and scan reports)<\/li>\n<li>If available, pieces from a prior biopsy or procedure will be collected and used for future research about ECD. <em>You can still join the registry if you have not had a biopsy or if you do not want to send biopsy pieces to MSK.<\/em><\/li>\n<li>The Registry will also collect copies of any scans that you may have had in the past related to your disease, including MRI, PET, x-rays, or CT scans. <em>You can still join the registry if you do not want to have scans sent to MSK.<\/em><\/li>\n<\/ul>\n<p>There will be no cost to you for joining the registry.\u00a0 If you decide to participate in this research database, your part of the study will consist of completing surveys, also called questionnaires, about your symptoms and quality of life. Questionnaires for this study may be completed on the internet or on paper and mailed back to Memorial Sloan Kettering Cancer Center. If you choose to complete the surveys by paper, you will be provided with pre-paid postage so that you can mail the surveys back. Please find the online survey link below.<\/p>\n<p><strong>You will be asked to complete surveys when you join, after 6 months of joining, and yearly for 3 years. You will also be asked to complete the surveys if your ECD treatment changes for any reason.<\/strong><\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;How do I join the ECD Patient Registry?&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>If you are interested in learning more about this study, please contact the study team by phone or e-mail.<\/p>\n<blockquote>\n<p><strong>Phone (212) 610-0720<\/strong><\/p>\n<p><strong>Fax (929) 321-1050<\/strong><\/p>\n<p><strong>Email: <span class=\"reverse\">neuECDRegistry@mskcc.org<\/span><\/strong><\/p>\n<\/blockquote>\n<p>You will have a chance to discuss the details of the study and to ask as many questions as you would like before making an informed decision as to whether you wish to participate.<\/p>\n<p>If you decide to join the study, you will be provided an informed consent form giving you the details about the study in written form.\u00a0 Once you have read the consent form you may have additional questions you would like answered.\u00a0 Once all your questions have been answered to your satisfaction, you will be asked to sign the consent form.<\/p>\n<p>If you complete the consent process by phone and sign a consent form that is mailed to you, then you will be provided a pre-paid envelope to mail your signed consent form back to the coordinator.<\/p>\n<p>This consent process can be done over the phone or the Internet, eliminating the need for you to travel to MSK to join the study.\u00a0\u00a0To find out if you are eligible to participate in the ECD Patient Registry, follow this link.<\/p>\n<p><a class=\"cont-us-btn\" href=\"https:\/\/redcap.mskcc.org\/surveys\/?s=JXWLJMMXFD\" target=\"_blank\" rel=\"noopener noreferrer\">ECD Patient Registry<\/a><\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;Who can participate?&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>Anyone who has been diagnosed with ECD, and whose medical records are in English, can take part in the study. European law restricts the participation of individuals from some European countries.<\/p>\n<p>You can join the registry even if you are not a patient at MSK.<\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;Privacy and Confidentiality&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>Your privacy is very important to us and the researchers will make every effort to protect it. The trained staff at MSK may review your records if necessary.<\/p>\n<p>If your information from this study is used in any reports or publications, your name or anything else that could identify you will not be used.<\/p>\n<p>Your information may be given out if required by law. For example, certain states require doctors to report to health boards if they find a disease like tuberculosis. However, the researchers will do their best to make sure that any information that is released will not identify you.<\/p>\n<p>Access to your protected health information will be limited to those listed in the Research Authorization form, which is a part of the informed consent process.<\/p>\n<p>[\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;If I join the ECD Patient Registry, is this the same as joining the ECD Global Alliance?&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<p>No, the ECD Patient Registry is <strong><u>separate<\/u><\/strong> from the ECD Global Alliance. If you would like to join the ECD Global Alliance and become a member of our community, please follow the link below to register with the ECD Global Alliance. We hope that you will join both to help further research on ECD, however, this is voluntary and is your choice.<\/p>\n<p>A close relationship between the patient community and the ECD Global Alliance allows easy promotion of patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. Being a registered member of the ECD Global Alliance allows you to be notified when new studies and treatments are available.<\/p>\n<p>Here are more reasons to join the ECDGA!<\/p>\n<ul>\n<li>Empowerment: You don\u2019t have to be a victim. You can make a difference.<\/li>\n<li>Meet Other People: Cut through the isolation and make new friends.<\/li>\n<li>Find the Latest Treatment Information: New treatments, tips, and information are available from the organization and its members.<\/li>\n<li>Have Fun: Be around people who \u201cget it\u201d and find ways to incorporate what you love into helping find a cure.<\/li>\n<li>Gain New Skills: Volunteer opportunities are limitless.<\/li>\n<li>Set an Example: Show others what can be done and how hard work helps to \u201cmanage problems.\u201d<\/li>\n<li>Get Access to Experts: Access to ECD experts is available through the organization.<\/li>\n<\/ul>\n<p><a class=\"cont-us-btn\" href=\"https:\/\/www.erdheim-chester.org\/join\/\" target=\"_blank\" rel=\"noopener noreferrer\">Join the ECDGA<\/a><\/p>\n<p>[\/et_pb_accordion_item][\/et_pb_accordion][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F2F2F2&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;3_5,2_5&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;3_5&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>ECD Survivorship Study<\/h2>\n<p><strong>Help understand the issues facing ECD patients and families living with ECD.  Participate in this important research from the comfort of your own home. <\/strong><\/p>\n<p>This survivorship study aims to understand the stresses experienced by individuals living with Erdheim-Chester Disease.  This research is essential because it highlights the need for comprehensive care that extends beyond simply treating ECD itself.  By understanding patients&#8217; needs, healthcare providers can offer more holistic care for patients and their families throughout the ECD journey.<\/p>\n<p>This study aims to gather comprehensive data that will facilitate the development of follow-up care guidelines and enhance patient counseling.  Some of the issues that will be better understood by this study include understanding long-term issues facing people living with ECD, such as pain, fatigue, anxiety, cognitive issues, etc. <\/p>\n<p>By participating in this study, you can help everyone understand the issues facing individuals in the ECD community.  With that understanding, care can be improved. <\/p>\n<p>Any ECD patient who can read and write English is eligible to participate in the study.  You will complete a survey in the comfort of your home.  There are no costs to the patient to participate in this study, and no travel is required.  (For deceased patients, caregivers are welcome to participate for their loved ones.) <\/p>\n<p>Any ECD patient who can read and write English is eligible to participate in the study. You will complete a survey in the comfort of your home. There are no costs to the patient to participate in this study, and no travel is required. (For deceased patients, caregivers are welcome to participate for their loved ones.)<\/p>\n<p>To participate, please contact the ECD Global Alliance.[\/et_pb_text][et_pb_button button_url=&#8221;mailto:support@erdheim-chester.org?subject=Interest%20in%20Participating%20in%20the%20UAB%20Survivorship%20Study&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Participate&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||5px|||&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;2_5&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_video src=&#8221;https:\/\/youtu.be\/3ZZMoTX1500?si=VbOF7ie-kptADM80&#8243; image_src=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/11\/Screenshot-2025-11-20-201401.png&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_video][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The ECDGA YouTube playlist, &#8220;Research into ECD by ECDGA,&#8221; includes 40 videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, research, and advances in patient care.ECD Patient Registry ECD research [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<h2>ECD Patient Registry<\/h2>\r\n<strong>ECD research needs your help!\u00a0 An Erdheim-Chester Disease patient registry database has been developed.\u00a0 Now we need your data to make it useful!<\/strong>\r\n\r\n<img class=\"img-style-1 alignright\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2014\/11\/shutterstock_113775325.png\" alt=\"\">\r\n\r\nThe ECD Patient Registry is a medical database collecting information and\/or samples from patients diagnosed with ECD.\u00a0 This data will be used to help scientists advance knowledge of ECD and its treatment.\u00a0 Read about the registry in detail below, including how to enroll.\r\n\r\nPlease note that by joining the ECD Patient Registry, you are NOT joining the ECD Global Alliance membership!\u00a0 If you are not yet a member of the ECDGA, please also join the ECDGA by following this link below. If you are already a member, please consider also joining the Registry.\r\n\r\n<a class=\"cont-us-btn\" href=\"https:\/\/www.erdheim-chester.org\/join\" target=\"_blank\" rel=\"noopener noreferrer\">Join the ECD Global Alliance<\/a>\r\n\r\nTo find out if you are eligible to participate in the ECD Patient Registry, follow this link.\u00a0\r\n\r\n<a class=\"cont-us-btn\" href=\"https:\/\/redcap.mskcc.org\/surveys\/?s=JXWLJMMXFD\" target=\"_blank\" rel=\"noopener noreferrer\">ECD Patient Registry<\/a>\r\n\r\nRead the most recent data published from the registry collection:<strong> <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/01\/2020-Registry-Update-1.pdf\">2020 Registry Update<\/a><\/strong>\r\n\r\nIn late 2018, the registry resulted in the following symptom-assessment article.\u00a0 Findings conclude that patients with ECD possess widely varied and unappreciated symptomatology. <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/01\/symptoms-Diamond-ECD-SS-Blood-Advances.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease<\/a>\u00a0\r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4]\r\n\r\n[accordion-item title=\"About the Registry\"]<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/11\/mskcc.png\" rel=\"attachment wp-att-3117\"><img class=\"alignright size-full wp-image-3117\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/11\/mskcc.png\" alt=\"mskcc\" width=\"236\" height=\"227\"><\/a>\r\n\r\nThe Erdheim-Chester Disease Registry, led by Memorial Sloan Kettering Cancer Center (MSK), unites leading researchers with people like you who are interested in taking part in building an informational database. The focus of this registry will be to help scientists advance our knowledge of ECD, how it affects the lives of patients, and how ECD treatments work. \u00a0The ultimate goal \u2013 a cure!\r\n\r\nErdheim-Chester disease (ECD) is a rare disease that affects about 1,000 people worldwide. Because ECD is so rare, we are creating a patient registry to help gather information on ECD. A medical registry is a systematic collection of a clearly defined set of health and demographic data for patients with specific health problems, held in a central database for a predefined purpose. In the case of the ECD Registry, it will serve to increase knowledge about the condition and how it may be treated.\r\n\r\nThe focus is to understand more about what kinds of health problems are caused by ECD, what happens as a result of different treatments for ECD, and how ECD affects people\u2019s feelings and attitudes. We also want to learn how these things change over time for people with ECD. To try to figure this out, doctors would like to collect information about people who have Erdheim-Chester disease and how they are treated for the disease.\r\n\r\n[\/accordion-item][accordion-item title=\"Why join?\"]\r\n\r\nScientists have made tremendous progress in the fight against the disease in just the past decade, and new studies launch every year.\u00a0But researchers can't do the work alone; they need information from people like you to conduct their research.\r\n\r\nMemorial Sloan Kettering Cancer Center (MSK) serves as the trusted custodian of this centralized database and storage of samples. This data will be available to investigators studying the disease. The registry is designed to answer questions and provide information for investigators to find effective treatments.\r\n\r\nThe ECDGA is committed to continuing the registry\u2019s management and funding so we can continue the growth of invaluable information this database will provide to the community.\r\n\r\n[\/accordion-item][accordion-item title=\"How does the Registry work?\"]\r\n\r\nIf you would like to participate in the Registry, the MSK team will request the following information to be sent from your doctor.\r\n<ul>\r\n \t<li>Medical reports (doctor's notes, laboratory and scan reports)<\/li>\r\n \t<li>If available, pieces from a prior biopsy or procedure will be collected and used for future research about ECD. <em>You can still join the registry if you have not had a biopsy or if you do not want to send biopsy pieces to MSK.<\/em><\/li>\r\n \t<li>The Registry will also collect copies of any scans that you may have had in the past related to your disease, including MRI, PET, x-rays, or CT scans. <em>You can still join the registry if you do not want to have scans sent to MSK.<\/em><\/li>\r\n<\/ul>\r\nThere will be no cost to you for joining the registry.\u00a0 If you decide to participate in this research database, your part of the study will consist of completing surveys, also called questionnaires, about your symptoms and quality of life. Questionnaires for this study may be completed on the internet or on paper and mailed back to Memorial Sloan Kettering Cancer Center. If you choose to complete the surveys by paper, you will be provided with pre-paid postage so that you can mail the surveys back. Please find the online survey link below.\r\n\r\n<strong>You will be asked to complete surveys when you join, after 6 months of joining, and yearly for 3 years. You will also be asked to complete the surveys if your ECD treatment changes for any reason.<\/strong>\r\n\r\n[\/accordion-item][accordion-item title=\"How do I join the ECD Patient Registry?\"]\r\n\r\nIf you are interested in learning more about this study, please contact the study team by phone or e-mail.\r\n<blockquote><strong>Phone (212) 610-0720<\/strong>\r\n\r\n<strong>Fax (929) 321-1050<\/strong>\r\n\r\n<strong>Email: <span class=\"reverse\">neuECDRegistry@mskcc.org<\/span><\/strong><\/blockquote>\r\nYou will have a chance to discuss the details of the study and to ask as many questions as you would like before making an informed decision as to whether you wish to participate.\r\n\r\nIf you decide to join the study, you will be provided an informed consent form giving you the details about the study in written form.\u00a0 Once you have read the consent form you may have additional questions you would like answered.\u00a0 Once all your questions have been answered to your satisfaction, you will be asked to sign the consent form.\r\n\r\nIf you complete the consent process by phone and sign a consent form that is mailed to you, then you will be provided a pre-paid envelope to mail your signed consent form back to the coordinator.\r\n\r\nThis consent process can be done over the phone or the Internet, eliminating the need for you to travel to MSK to join the study.\u00a0\u00a0To find out if you are eligible to participate in the ECD Patient Registry, follow this link.\u00a0\r\n\r\n<a class=\"cont-us-btn\" href=\"https:\/\/redcap.mskcc.org\/surveys\/?s=JXWLJMMXFD\" target=\"_blank\" rel=\"noopener noreferrer\">ECD Patient Registry<\/a>\r\n\r\n[\/accordion-item][accordion-item title=\"Who can participate?\"]\r\n\r\nAnyone who has been diagnosed with ECD, and whose medical records are in English, can take part in the study. European law restricts the participation of individuals from some European countries.\r\n\r\nYou can join the registry even if you are not a patient at MSK.\r\n\r\n[\/accordion-item][accordion-item title=\"Privacy and Confidentiality\"]\r\n\r\nYour privacy is very important to us and the researchers will make every effort to protect it. The trained staff at MSK may review your records if necessary.\r\n\r\nIf your information from this study is used in any reports or publications, your name or anything else that could identify you will not be used.\r\n\r\nYour information may be given out if required by law. For example, certain states require doctors to report to health boards if they find a disease like tuberculosis. However, the researchers will do their best to make sure that any information that is released will not identify you.\r\n\r\nAccess to your protected health information will be limited to those listed in the Research Authorization form, which is a part of the informed consent process.\r\n\r\n[\/accordion-item][accordion-item title=\"If I join the ECD Patient Registry, is this the same as joining the ECD Global Alliance?\"]\r\n\r\nNo, the ECD Patient Registry is <strong><u>separate<\/u><\/strong> from the ECD Global Alliance. If you would like to join the ECD Global Alliance and become a member of our community, please follow the link below to register with the ECD Global Alliance. We hope that you will join both to help further research on ECD, however, this is voluntary and is your choice.\r\n\r\nA close relationship between the patient community and the ECD Global Alliance allows easy promotion of patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. Being a registered member of the ECD Global Alliance allows you to be notified when new studies and treatments are available.\r\n\r\nHere are more reasons to join the ECDGA!\r\n<ul>\r\n \t<li>Empowerment: You don\u2019t have to be a victim. You can make a difference.<\/li>\r\n \t<li>Meet Other People: Cut through the isolation and make new friends.<\/li>\r\n \t<li>Find the Latest Treatment Information: New treatments, tips, and information are available from the organization and its members.<\/li>\r\n \t<li>Have Fun: Be around people who \u201cget it\u201d and find ways to incorporate what you love into helping find a cure.<\/li>\r\n \t<li>Gain New Skills: Volunteer opportunities are limitless.<\/li>\r\n \t<li>Set an Example: Show others what can be done and how hard work helps to \u201cmanage problems.\u201d<\/li>\r\n \t<li>Get Access to Experts: Access to ECD experts is available through the organization.<\/li>\r\n<\/ul>\r\n<a class=\"cont-us-btn\" href=\"https:\/\/www.erdheim-chester.org\/join\/\" target=\"_blank\" rel=\"noopener noreferrer\">Join the ECDGA<\/a>\r\n\r\n[\/accordion-item][\/accordion]","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-2666","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/pages\/2666","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=2666"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/pages\/2666\/revisions"}],"predecessor-version":[{"id":166298,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/pages\/2666\/revisions\/166298"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=2666"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}