{"id":1423,"date":"2021-10-28T14:32:43","date_gmt":"2021-10-28T13:32:43","guid":{"rendered":"https:\/\/sites.manchester.ac.uk\/eden\/?page_id=1423"},"modified":"2022-02-11T17:09:39","modified_gmt":"2022-02-11T17:09:39","slug":"home","status":"publish","type":"page","link":"https:\/\/sites.manchester.ac.uk\/eden\/","title":{"rendered":"Home"},"content":{"rendered":"

[et_pb_section bb_built=”1″ admin_label=”section” fullwidth=”on” next_background_color=”#000000″ global_module=”322″][et_pb_fullwidth_menu global_parent=”322″ _builder_version=”3.0.106″ menu_id=”7″ submenu_direction=”downwards” fullwidth_menu=”off” background_layout=”dark” module_class=”main-navigation” \/][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”on” specialty=”off” prev_background_color=”#000000″ next_background_color=”#000000″][et_pb_fullwidth_slider show_arrows=”off” show_pagination=”off” background_position=”top_left” custom_css_slide_description=”animation: none!important;” custom_css_slide_title=”animation:none!important;” custom_padding=”|||” box_shadow_blur=”10px” box_shadow_color=”rgba(0,0,0,0.1)” button_text_size__hover_enabled=”off” button_text_size__hover=”null” button_one_text_size__hover_enabled=”off” button_one_text_size__hover=”null” button_two_text_size__hover_enabled=”off” button_two_text_size__hover=”null” button_text_color__hover_enabled=”off” button_text_color__hover=”null” button_one_text_color__hover_enabled=”off” button_one_text_color__hover=”null” button_two_text_color__hover_enabled=”off” button_two_text_color__hover=”null” button_border_width__hover_enabled=”off” button_border_width__hover=”null” button_one_border_width__hover_enabled=”off” button_one_border_width__hover=”null” button_two_border_width__hover_enabled=”off” button_two_border_width__hover=”null” button_border_color__hover_enabled=”off” button_border_color__hover=”null” button_one_border_color__hover_enabled=”off” button_one_border_color__hover=”null” button_two_border_color__hover_enabled=”off” button_two_border_color__hover=”null” button_border_radius__hover_enabled=”off” button_border_radius__hover=”null” button_one_border_radius__hover_enabled=”off” button_one_border_radius__hover=”null” button_two_border_radius__hover_enabled=”off” button_two_border_radius__hover=”null” button_letter_spacing__hover_enabled=”on” button_letter_spacing__hover=”0″ button_one_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover=”null” button_two_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover=”null” button_bg_color__hover_enabled=”off” button_bg_color__hover=”null” button_one_bg_color__hover_enabled=”off” button_one_bg_color__hover=”null” button_two_bg_color__hover_enabled=”off” button_two_bg_color__hover=”null” _builder_version=”3.17.6″][et_pb_slide _builder_version=”3.17.6″ button_link=”#” url_new_window=”off” link_option_url_new_window=”off” background_color=”#ffffff” use_background_color_gradient=”off” background_color_gradient_start=”#2b87da” background_color_gradient_end=”#29c4a9″ background_color_gradient_type=”linear” background_color_gradient_direction=”180deg” background_color_gradient_direction_radial=”center” background_color_gradient_start_position=”0%” background_color_gradient_end_position=”100%” background_color_gradient_overlays_image=”off” background_image=”https:\/\/sites.manchester.ac.uk\/eden\/wp-content\/uploads\/sites\/346\/2021\/11\/home.png” parallax=”off” parallax_method=”on” background_size=”cover” background_position=”top_left” background_repeat=”no-repeat” background_blend=”normal” allow_player_pause=”off” background_video_pause_outside_viewport=”on” use_bg_overlay=”off” use_text_overlay=”off” text_border_radius=”3″ alignment=”center” child_filter_hue_rotate=”0deg” child_filter_saturate=”100%” child_filter_brightness=”100%” child_filter_contrast=”100%” child_filter_invert=”0%” child_filter_sepia=”0%” child_filter_opacity=”100%” child_filter_blur=”0px” child_mix_blend_mode=”normal” background_layout=”dark” text_shadow_style=”none” header_text_shadow_style=”none” body_text_shadow_style=”none” custom_button=”on” button_bg_color=”#27a2db” button_bg_use_color_gradient=”off” button_bg_color_gradient_overlays_image=”off” button_border_color=”#27a2db” button_use_icon=”on” button_on_hover=”on” button_text_shadow_style=”none” box_shadow_style_button=”none” hover_transition_duration=”300ms” hover_transition_delay=”0ms” hover_transition_speed_curve=”ease” heading=”EDEN study” text_shadow_horizontal_length=”0em” text_shadow_vertical_length=”0em” text_shadow_blur_strength=”0em” header_text_shadow_horizontal_length=”0em” header_text_shadow_vertical_length=”0em” header_text_shadow_blur_strength=”0em” body_text_shadow_horizontal_length=”0em” body_text_shadow_vertical_length=”0em” body_text_shadow_blur_strength=”0em” button_text_shadow_horizontal_length=”0em” button_text_shadow_vertical_length=”0em” button_text_shadow_blur_strength=”0em”]<\/p>\n

Identifying early markers of autism and attention deficit hyperactivity disorder in Neurofibromatosis type 1 (NF1).<\/p>\n

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EDEN study<\/h1>\n

The EDEN study aims to investigate early social, communication and attention development in infants who have a parent with NF1 or have NF1 themselves. <\/p>\n

This study is for families who have a history of NF1 in the family and have a baby under 14 months of age. Babies don\u2019t need to have a diagnosis of NF1 to take part.<\/p>\n

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On this page:<\/p>\n

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  1. About the study<\/a><\/li>\n
  2. Take part in the study<\/a><\/li>\n
  3. Information for parents<\/a><\/li>\n
  4. Information for clinical partners<\/a><\/li>\n
  5. Contact us<\/a><\/li>\n<\/ol>\n

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    [\/et_pb_text][et_pb_text admin_label=”Text Intro” _builder_version=”3.17.6″]<\/p>\n

    About the study<\/h2>\n

    EDEN is designed to identify early markers of behavioural difficulties such as autism and ADHD by understanding social and cognitive development of babies with NF1.<\/p>\n

    All babies born in a family with a history of NF1 are welcome to participate. We will compare the development of babies who have NF1 to those babies who do not inherit NF1.<\/p>\n

    By understanding early development, our aim is to speed up the discovery of treatments that can be used to prevent the emergence of learning, social and behavioural difficulties in NF1.<\/p>\n

    The study is a collaboration with Birkbeck, University of London and BASIS, The University of Manchester and Central Manchester University Hospitals NHS Foundation Trust.<\/p>\n

    The EDEN study is funded by Action Medical Research for Children, Great Ormond Street Hospital Charity, the Rosetrees Trust and the Medical Research Council.<\/p>\n

    More information about NF1 can be found on the Nerve Tumours UK<\/a> and Childhood Tumour Trust<\/a> websites.<\/p>\n

    [\/et_pb_text][et_pb_accordion _builder_version=”3.17.6″][et_pb_accordion_item _builder_version=”3.17.6″ title=”What is NF1?”]<\/p>\n

    NF1 is a genetic disorder which affects one in every 2,500 of the population.<\/p>\n

    NF1 affects individuals differently. For some people, NF1 is mild and may only cause some skin changes.  <\/p>\n

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    Around a third of individuals with NF1 will have a medcal problem related to the disorder at some time in their lives. For more information about the disorder visit<\/p>\n

    In children with NF1, mild learning problems are common. Our research suggests that up to 50% of children with NF1 may have ADHD and up to 30% may have an autism spectrum disorder (ASD).<\/p>\n

    These conditions are typically not diagnosed until middle childhood, limiting the effectiveness of interventions.<\/p>\n

    There is an urgent need to develop new early assessment and treatment approaches for learning and behavioural difficulties that are associated with NF1.<\/p>\n

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    \n< Back to top<\/a><\/p>\n

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    [\/et_pb_text][et_pb_text admin_label=”Take part text” _builder_version=”3.17.6″]<\/p>\n

    Take part in the study<\/h2>\n

    We are inviting babies under the age of 14 months to this study. Babies either need to have a diagnosis of NF1 or be born in a family where either parent (mother or father) has a diagnosis of NF1.<\/p>\n

    Families interested in the study can contact the study team by emailing eden@manchester.ac.uk<\/a>.<\/p>\n

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    \n< Back to top<\/a><\/p>\n

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    [\/et_pb_text][et_pb_text admin_label=”Info for parents” _builder_version=”3.17.6″]<\/p>\n

    Information for parents<\/h2>\n

    This study is for families who have a baby under 14 months of age diagnosed with NF1 by your doctor or born in a family where either parents has NF1<\/p>\n

    This study is currently recruiting and is open to all families with NF1 in the UK.<\/p>\n

    If you are pregnant and have NF1 (or your partner has NF1), you can contact the study team to participate once the baby is born.<\/p>\n

    If you are interested in participating in the study, get in touch. We will then talk to you about the study in detail and answer any questions you may have.<\/p>\n

    If the study is suitable for your family, we will invite you, and your child, to visit our Baby Lab at the Centre for Brain and Cognitive Development in London. A typical visit takes place over 5-6 hours, which includes time for meal and nap breaks. We cover travel and hotel expenses for the research visit.<\/p>\n