{"id":209071,"date":"2023-06-02T09:20:43","date_gmt":"2023-06-02T09:20:43","guid":{"rendered":"https:\/\/chungjansensyndrome.eu\/?page_id=209071"},"modified":"2025-12-31T11:54:10","modified_gmt":"2025-12-31T11:54:10","slug":"research","status":"publish","type":"page","link":"https:\/\/chungjansensyndrome.eu\/en\/news\/research\/","title":{"rendered":"Research"},"content":{"rendered":"

[et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” admin_label=”Title Section” _builder_version=”4.20.2″ _module_preset=”default” background_enable_color=”off” use_background_color_gradient=”on” background_color_gradient_stops=”rgba(13,75,126,0.95) 0%|rgba(13,75,126,0.95) 100%” background_color_gradient_overlays_image=”on” background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/02\/dna-1811955_1920.jpg” custom_margin=”-200px||||false|false” custom_padding=”250px||||false|false” custom_padding_tablet=”250px||||false|false” custom_padding_phone=”190px||0px||false|false” global_colors_info=”{}”][et_pb_row _builder_version=”4.19.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.19.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Research” _builder_version=”4.20.4″ text_font=”||||||||” header_font=”Montserrat|700|||||||” header_text_align=”center” header_text_color=”#f7f7f7″ header_font_size=”60px” header_line_height=”1.3em” custom_margin=”||||false|false” header_font_size_tablet=”60px” header_font_size_phone=”30px” header_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Research<\/h1>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” disabled_on=”off|off|off” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” custom_margin=”||||false|false” custom_padding=”||||false|false” custom_padding_tablet=”||||false|false” custom_padding_phone=”0px||0px||false|false” global_colors_info=”{}”][et_pb_row column_structure=”3_5,2_5″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” width_tablet=”” width_phone=”90%” width_last_edited=”on|phone” custom_padding_tablet=”” custom_padding_phone=”||0px||false|false” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”In the United States and The Netherlands” _builder_version=”4.20.4″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]In the United States and The Netherlands[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Chung-Jansen Syndrome is named after the two doctors\/researchers who have been conducting separate research into this gene variance.<\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|desktop” disabled_on=”off|off|off” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” width=”80%” width_tablet=”80%” width_phone=”100%” width_last_edited=”on|phone” max_width=”1080px” module_alignment=”center” custom_margin=”||||false|false” custom_margin_tablet=”-50px||||false|false” custom_margin_phone=”0px||||false|false” custom_margin_last_edited=”on|desktop” custom_padding=”||0px||false|false” custom_padding_tablet=”||||false|false” custom_padding_phone=”0px||0px||false|false” box_shadow_style=”preset1″ box_shadow_color_tablet=”” box_shadow_color_phone=”rgba(0,0,0,0)” box_shadow_color_last_edited=”on|phone” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”The Netherlands” _builder_version=”4.21.0″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”20px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]The Netherlands[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/06\/logo-amsterdamumc-dutch2.png” title_text=”logo-amsterdamumc-dutch2″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.21.0″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Dr. Sandra Jansen, together with Dr. Bert de Vries, published one of the first articles about abnormalities in the PHIP gene in 2017: nature.com<\/a>.
\nIn 2021 she teamed up with Dr. Agnies van Eeghen to start a PHIP expertise outpatient clinic at Amsterdam UMC. Adult patients or parents of children with the syndrome are welcome here for an intake interview. The purpose of the outpatient clinic is to set up a regional care network and to inform patients, their parents or caregivers and other health professionals.\n<\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_text _builder_version=”4.21.0″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

\nEpisign Research<\/strong><\/p>\n

Recently, a research group from Amsterdam UMC (including Niels Vos and Mieke van Haelst) together with colleagues from other countries published a new article on, among other things, Chung-Jansen syndrome. It was investigated whether people with Chung-Jansen syndrome have the same ‘signature’ when looking at something called ‘epigenetics’. There indeed appears to be a specific ‘epigenetic signature’ for people with Chung-Jansen syndrome. This will make it easier to diagnose other patients in the future and provide more clarity about the diagnosis if there is uncertainty.<\/p>\n

Read the article.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row make_equal=”on” custom_padding_last_edited=”on|desktop” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#f7f7f7″ background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/01\/dna-grayscale-op.jpg” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”50px|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Dr\u2019s involved in the PHIP outpatient clinic:” _builder_version=”4.21.0″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”20px” text_letter_spacing=”3px” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Dr\u2019s involved in the PHIP outpatient clinic:[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” background_color=”#f7f7f7″ background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/01\/dna-grayscale-op.jpg” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Prof. Dr. Mieke van Haelst” _builder_version=”4.20.4″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Prof. Dr. Mieke van Haelst[\/et_pb_text][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/Prof-Dr-Mieke-van-Haelst.jpeg” title_text=”Prof-Dr-Mieke-van-Haelst” align=”center” disabled_on=”off|on|on” _builder_version=”4.20.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Prof. Dr. Mieke van Haelst is a clinical geneticist with a special interest in predisposition and developmental disorders. She is the head of the clinical genetics section and director of the Emma Center for Personalized Medicine at Amsterdam UMC. <\/p>\n

She is also the president of the Dutch Society for Human Genetics in the Netherlands. Her scientific research focuses on finding genetic causes of hereditary disorders. <\/p>\n

She developed the genetic test for obesity in the Netherlands and aims for rapid therapy development for rare syndromes. <\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/Prof-Dr-Mieke-van-Haelst.jpeg” title_text=”Prof-Dr-Mieke-van-Haelst” align=”center” disabled_on=”on|off|off” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ make_equal=”on” _builder_version=”4.20.4″ _module_preset=”default” width_tablet=”” width_phone=”90%” width_last_edited=”on|phone” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Dr. Lotte Kleinendorst” _builder_version=”4.20.4″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Dr. Lotte Kleinendorst[\/et_pb_text][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/Dr-Lotte-Kleinendorst.jpeg” title_text=”Dr-Lotte-Kleinendorst” align=”center” disabled_on=”off|on|on” _builder_version=”4.20.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Dr. Lotte Kleinendorst has been working as a doctor in clinical genetics since 2015. She received her PhD in 2021 on rare genetic causes of obesity. <\/p>\n

She is currently in training as a clinical geneticist at the Amsterdam UMC. <\/p>\n

In addition, she has been appointed assistant professor at the Emma Center for Personalized Medicine, where she conducts research to provide faster diagnostics and customized care for children with a rare hereditary disorder. <\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/Dr-Lotte-Kleinendorst.jpeg” title_text=”Dr-Lotte-Kleinendorst” align=”center” disabled_on=”on|off|off” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” background_color=”#f7f7f7″ background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/01\/dna-grayscale-op.jpg” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%|20px|10%|false|false” custom_padding_tablet=”|10%|0px|10%|false|false” custom_padding_phone=”|5%|20px|5%|false|false” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.20.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Drs. Niels Vos” _builder_version=”4.27.5″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” hover_enabled=”0″ locked=”off” global_colors_info=”{}” sticky_enabled=”0″]Wenneke van Weelden, MD[\/et_pb_text][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2025\/12\/Van-Weelden.jpg” title_text=”Van Weelden” align=”center” disabled_on=”off|on|on” _builder_version=”4.27.5″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_image][et_pb_text _builder_version=”4.27.5″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” hover_enabled=”0″ text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

Wenneke van Weelden, MD, has been working as a physician at the Clinical Genetics outpatient clinic at Amsterdam UMC since 2022.<\/p>\n

In 2024, she began her PhD research on hereditary forms of obesity. This includes syndromes in which obesity is more common, such as Chung-Jansen syndrome.<\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2025\/12\/Van-Weelden.jpg” title_text=”Van Weelden” align=”center” disabled_on=”on|off|off” _builder_version=”4.27.5″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|desktop” disabled_on=”off|off|off” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” width=”80%” width_tablet=”80%” width_phone=”100%” width_last_edited=”on|phone” max_width=”1080px” module_alignment=”center” custom_margin=”50px||50px||false|false” custom_margin_tablet=”-50px||||false|false” custom_margin_phone=”0px||||false|false” custom_margin_last_edited=”on|desktop” custom_padding=”50px||0px||false|false” custom_padding_tablet=”||||false|false” custom_padding_phone=”0px||0px||false|false” box_shadow_style=”preset1″ box_shadow_color_tablet=”” box_shadow_color_phone=”rgba(0,0,0,0)” box_shadow_color_last_edited=”on|phone” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”United States” _builder_version=”4.21.0″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”20px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]United States[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/07\/bch-logo-452-78.png” title_text=”bch-logo-452-78″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.21.0″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

Dr. Wendy Chung is Chief of Pediatrics at Boston Children\u2019s Hospital. She has published multiple articles on the syndrome.<\/p>\n

    \n
  1. ncbi.nlm.nih.gov<\/a><\/li>\n
  2. molecularcasestudies.cshlp.org<\/a><\/li>\n
  3. Disruption Replication Fork Stability and Genome Integrity<\/a><\/li>\n
  4. Clinical phenotypes of individuals with Chung\u2013Jansen syndrome across age groups<\/a><\/li>\n<\/ol>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_text _builder_version=”4.21.0″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n

    \nNatural History Study<\/strong>
    \nThe ongoing research of the Natural History Study collects data from people with Chung Jansen syndrome to gain valuable insights into how the disease presents and develops over time. Examining the condition at different ages over time provides important information about the evolution of Chung Jansen syndrome throughout life. The information gathered allows researchers and clinicians to work on improving guidelines and support for medical management, and to inform future clinical trials.\n<\/p>\n

    For more information and\/or participation in this study, please send an email via the email addresses listed on the contact page<\/a>.<\/p>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row make_equal=”on” custom_padding_last_edited=”on|desktop” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#f7f7f7″ background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/01\/dna-grayscale-op.jpg” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”50px|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Dr\u2019s involved in the Study:” _builder_version=”4.21.0″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”20px” text_letter_spacing=”3px” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Dr\u2019s involved in the Study:[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_5,2_5″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” background_color=”#f7f7f7″ background_image=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/01\/dna-grayscale-op.jpg” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_padding=”|10%||10%|false|false” custom_padding_tablet=”|10%||10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Prof. Dr. Mieke van Haelst” _builder_version=”4.21.0″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Dr. Wendy Chung[\/et_pb_text][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/wendy-chung-contact.jpeg” title_text=”wendy-chung-contact” align=”center” disabled_on=”off|on|on” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.21.0″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]ascendstudy.com<\/a>[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/04\/wendy-chung-contact.jpeg” title_text=”wendy-chung-contact” align=”center” disabled_on=”on|off|off” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ disabled_on=”on|on|on” _builder_version=”4.21.0″ _module_preset=”default” background_enable_color=”off” background_enable_image=”off” custom_margin=”50px||||false|false” custom_padding=”||||false|false” disabled=”on” global_colors_info=”{}”][et_pb_row column_structure=”2_5,3_5″ use_custom_gutter=”on” gutter_width=”2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#FFFFFF” 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    Dr. Wendy Chung\u2019s lab is at Columbia University Medical Center in New York City. She did a study on the syndrome in both 2016 and 2018\/19 and published three articles:<\/p>\n

      \n
    1. ncbi.nlm.nih.gov<\/a><\/li>\n
    2. molecularcasestudies.cshlp.org<\/a><\/li>\n
    3. Disruption Replication Fork Stability and Genome Integrity<\/a><\/li>\n<\/ol>\n

      Ongoing Study<\/strong>
      There is currently a study on the syndrome in which patients with the syndrome can register for participation.<\/span><\/p>\n

      The intention is to obtain sufficient data from patients in order to achieve (evidence based) clinical care guidelines. Therefor more participants are required to enroll in this research.<\/span><\/p>\n

      For detailed information about this study please view the PHIP Family Meeting Presentation<\/a> and the YouTube video PHIP Family Meeting 2022<\/a>.
      For futher information and registration you can send an email to:<\/p>\n

      Wendy Chung<\/strong><\/br>wkc15@cumc.columbia.edu<\/a>\n<\/p>\n

      Sean Calamia<\/strong><\/br>sc5009@cumc.columbia.edu<\/a>\n<\/p>\n

      [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

      ResearchIn the United States and The NetherlandsChung-Jansen Syndrome is named after the two doctors\/researchers who have been conducting separate research into this gene variance.The NetherlandsDr. Sandra Jansen, together with Dr. Bert de Vries, published one of the first articles about abnormalities in the PHIP gene in 2017: nature.com. In 2021 she teamed up with Dr. […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":1071,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-209071","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/209071","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/comments?post=209071"}],"version-history":[{"count":97,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/209071\/revisions"}],"predecessor-version":[{"id":210283,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/209071\/revisions\/210283"}],"up":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/pages\/1071"}],"wp:attachment":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/media?parent=209071"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}