Survey Data from the Menstrual Health in Adolescents with Down syndrome in the UK Study

Greenland, KORCID logo (2026). Survey Data from the Menstrual Health in Adolescents with Down syndrome in the UK Study. [Dataset]. London School of Hygiene & Tropical Medicine, London, United Kingdom. 10.17037/DATA.00005282.
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Survey data collected as part of a mixed-methods study to investigate the menstrual health of adolescents with Down syndrome in the United Kingdom. The online survey was completed by caregivers of adolescents aged 10-19 with Down syndrome, irrespective of whether they have begun menstruating. This was followed by interviews with selected participants (which are not made available to protect the confidentiality of participants).

Additional Information

Anonymised data will be made available for use in health research. Interested parties will be asked to provide evidence of ethics approval and asked to sign a light-touch data sharing agreement prior to being provided access.

Keywords

menstrual health; Down syndrome; intellectual disability; United Kingdom

Item Type Dataset
Resource Type
Resource Type
Resource Description
Dataset
Quantitative survey data in Stata
Capture method Questionnaire: Fixed form - Web-based
Collection Period
From
To
18 September 2024
23 July 2025
Date 23 June 2026
Language(s) of written materials English, Welsh
Creator(s) Greenland, KORCID logo
LSHTM Faculty/Department Faculty of Epidemiology and Population Health > Dept of Population Health (2012- )
Research Centre The International Centre for Evidence in Disability
Participating Institutions London School of Hygiene & Tropical Medicine
Funders
Project
Funder
Grant Number
Funder URI
Menstrual Health in Adolescents with Down syndrome
Down's Syndrome Research Foundation UK
UNSPECIFIED
https://www.dsrf-uk.org/
Date Deposited 01 Jul 2026 14:06
Last Modified 02 Jul 2026 09:29
Publisher London School of Hygiene & Tropical Medicine

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Data / Code

Survey_analysis_dataset.zip
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Data
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Survey data on menstrual health in adolescents with Down syndrome in the UK
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Documentation

Survey_analysis_dataset_codebook.html
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Documentation
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Codebook for survey analysis dataset
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Study Instrument

ODK_survey.xlsx
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Survey questionnaire implemented in Open Data Kit
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