Protocol for the Sri Lankan Cerebral Palsy Register pilot study

IntroductionCerebral palsy (CP) describes a heterogeneous group of motor disorders resulting from disturbance in the developing brain. CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may b...

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Published in:BMJ open 2020-08, Vol.10 (8), p.e039353-e039353
Main Authors: Heiyanthuduwage, Thilini Madushika, Sumanasena, Samanmali P, Kitnasamy, Gopi, Smithers Sheedy, Hayley, Khandaker, Gulam, Fernando, Romaniya, Wijesekara, Saraji, Jagoda, Jayatri, Ratnayake, Pyara, Wanigasinghe, Jithangi, Mclntyre, Sarah, Goldsmith, Shona, Waight, Emma, Badawi, Nadia, Muhit, Mohammad, Muttiah, Nimisha
Format: Article
Language:English
Subjects:
Adult
Births
Cerebral palsy
Cerebral Palsy - epidemiology
Child
developmental neurology & neurodisability
Epidemiology
Etiology
Humans
Longitudinal Studies
Neurology
Pediatrics
perinatology
Pilot Projects
Prevalence
Provinces
public health
Rehabilitation
rehabilitation medicine
Risk factors
Sri Lanka - epidemiology
Surveillance
Teaching hospitals
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creator Heiyanthuduwage, Thilini Madushika
Sumanasena, Samanmali P
Kitnasamy, Gopi
Smithers Sheedy, Hayley
Khandaker, Gulam
Fernando, Romaniya
Wijesekara, Saraji
Jagoda, Jayatri
Ratnayake, Pyara
Wanigasinghe, Jithangi
Mclntyre, Sarah
Goldsmith, Shona
Waight, Emma
Badawi, Nadia
Muhit, Mohammad
Muttiah, Nimisha
description IntroductionCerebral palsy (CP) describes a heterogeneous group of motor disorders resulting from disturbance in the developing brain. CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may be greater and aetiological risk factors different. In Sri Lanka, a LMIC, there have been no epidemiological studies of CP to date. Systematically collected data are required to identify opportunities for primary and secondary prevention, to plan and establish services to support children and adults with CP and their families and to act as a sampling frame for new research. Here we describe a pilot study protocol for a CP register in Sri Lanka.Methods and analysisThe aim of this study is to establish a CP register in Sri Lanka. We will use different surveillance methodologies in two provinces of Sri Lanka: hospital and community surveillance in the Western Province and community surveillance in the Eastern Province. A common record form will collect demographic, clinical and service data for children with CP
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CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may be greater and aetiological risk factors different. In Sri Lanka, a LMIC, there have been no epidemiological studies of CP to date. Systematically collected data are required to identify opportunities for primary and secondary prevention, to plan and establish services to support children and adults with CP and their families and to act as a sampling frame for new research. Here we describe a pilot study protocol for a CP register in Sri Lanka.Methods and analysisThe aim of this study is to establish a CP register in Sri Lanka. We will use different surveillance methodologies in two provinces of Sri Lanka: hospital and community surveillance in the Western Province and community surveillance in the Eastern Province. A common record form will collect demographic, clinical and service data for children with CP &lt;18 years living in these two provinces. Data will be transferred to a secure online data repository and used to describe the epidemiology of CP in these regions. We will describe the strengths and challenges of the surveillance mechanisms and estimate the resources required for ongoing hospital and community based surveillance in the Western and Eastern provinces and to include additional provinces across the country.Ethics and disseminationThis study has ethical clearance from The University of Kelaniya, National Health Research Council, the Institutional Ethics Review Committee of the Lady Ridgeway Hospital, Colombo South Teaching Hospital and the Director of the North Colombo Teaching Hospital. Results from this research will be disseminated through local and international conferences and through publications in peer-reviewed journals.</description><identifier>ISSN: 2044-6055</identifier><identifier>EISSN: 2044-6055</identifier><identifier>DOI: 10.1136/bmjopen-2020-039353</identifier><identifier>PMID: 32820001</identifier><language>eng</language><publisher>England: British Medical Journal Publishing Group</publisher><subject>Adult ; Births ; Cerebral palsy ; Cerebral Palsy - epidemiology ; Child ; developmental neurology &amp; neurodisability ; Epidemiology ; Etiology ; Humans ; Longitudinal Studies ; Neurology ; Pediatrics ; perinatology ; Pilot Projects ; Prevalence ; Provinces ; public health ; Rehabilitation ; rehabilitation medicine ; Risk factors ; Sri Lanka - epidemiology ; Surveillance ; Teaching hospitals</subject><ispartof>BMJ open, 2020-08, Vol.10 (8), p.e039353-e039353</ispartof><rights>Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.</rights><rights>2020 Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2020</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b539t-5b8466e460374cd0ba6a9830b6a10aa6610137e16e4ae06ead89b8414a1f3ff23</citedby><cites>FETCH-LOGICAL-b539t-5b8466e460374cd0ba6a9830b6a10aa6610137e16e4ae06ead89b8414a1f3ff23</cites><orcidid>0000-0003-1144-7417</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/2663152996/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2663152996?pq-origsite=primo$$EHTML$$P50$$Gproquest$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,881,3180,25732,27903,27904,36991,36992,44569,53770,53772,55320,55329,74873,77343,77344,77407,77433</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32820001$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Heiyanthuduwage, Thilini Madushika</creatorcontrib><creatorcontrib>Sumanasena, Samanmali P</creatorcontrib><creatorcontrib>Kitnasamy, Gopi</creatorcontrib><creatorcontrib>Smithers Sheedy, Hayley</creatorcontrib><creatorcontrib>Khandaker, Gulam</creatorcontrib><creatorcontrib>Fernando, Romaniya</creatorcontrib><creatorcontrib>Wijesekara, Saraji</creatorcontrib><creatorcontrib>Jagoda, Jayatri</creatorcontrib><creatorcontrib>Ratnayake, Pyara</creatorcontrib><creatorcontrib>Wanigasinghe, Jithangi</creatorcontrib><creatorcontrib>Mclntyre, Sarah</creatorcontrib><creatorcontrib>Goldsmith, Shona</creatorcontrib><creatorcontrib>Waight, Emma</creatorcontrib><creatorcontrib>Badawi, Nadia</creatorcontrib><creatorcontrib>Muhit, Mohammad</creatorcontrib><creatorcontrib>Muttiah, Nimisha</creatorcontrib><title>Protocol for the Sri Lankan Cerebral Palsy Register pilot study</title><title>BMJ open</title><addtitle>BMJ Open</addtitle><addtitle>BMJ Open</addtitle><description>IntroductionCerebral palsy (CP) describes a heterogeneous group of motor disorders resulting from disturbance in the developing brain. CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may be greater and aetiological risk factors different. In Sri Lanka, a LMIC, there have been no epidemiological studies of CP to date. Systematically collected data are required to identify opportunities for primary and secondary prevention, to plan and establish services to support children and adults with CP and their families and to act as a sampling frame for new research. Here we describe a pilot study protocol for a CP register in Sri Lanka.Methods and analysisThe aim of this study is to establish a CP register in Sri Lanka. We will use different surveillance methodologies in two provinces of Sri Lanka: hospital and community surveillance in the Western Province and community surveillance in the Eastern Province. A common record form will collect demographic, clinical and service data for children with CP &lt;18 years living in these two provinces. Data will be transferred to a secure online data repository and used to describe the epidemiology of CP in these regions. We will describe the strengths and challenges of the surveillance mechanisms and estimate the resources required for ongoing hospital and community based surveillance in the Western and Eastern provinces and to include additional provinces across the country.Ethics and disseminationThis study has ethical clearance from The University of Kelaniya, National Health Research Council, the Institutional Ethics Review Committee of the Lady Ridgeway Hospital, Colombo South Teaching Hospital and the Director of the North Colombo Teaching Hospital. 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CP occurs in approximately 2.1 per 1000 live births in high-income countries, but in low- and middle-income countries (LMICs) the prevalence and severity of CP may be greater and aetiological risk factors different. In Sri Lanka, a LMIC, there have been no epidemiological studies of CP to date. Systematically collected data are required to identify opportunities for primary and secondary prevention, to plan and establish services to support children and adults with CP and their families and to act as a sampling frame for new research. Here we describe a pilot study protocol for a CP register in Sri Lanka.Methods and analysisThe aim of this study is to establish a CP register in Sri Lanka. We will use different surveillance methodologies in two provinces of Sri Lanka: hospital and community surveillance in the Western Province and community surveillance in the Eastern Province. A common record form will collect demographic, clinical and service data for children with CP &lt;18 years living in these two provinces. Data will be transferred to a secure online data repository and used to describe the epidemiology of CP in these regions. We will describe the strengths and challenges of the surveillance mechanisms and estimate the resources required for ongoing hospital and community based surveillance in the Western and Eastern provinces and to include additional provinces across the country.Ethics and disseminationThis study has ethical clearance from The University of Kelaniya, National Health Research Council, the Institutional Ethics Review Committee of the Lady Ridgeway Hospital, Colombo South Teaching Hospital and the Director of the North Colombo Teaching Hospital. Results from this research will be disseminated through local and international conferences and through publications in peer-reviewed journals.</abstract><cop>England</cop><pub>British Medical Journal Publishing Group</pub><pmid>32820001</pmid><doi>10.1136/bmjopen-2020-039353</doi><orcidid>https://orcid.org/0000-0003-1144-7417</orcidid><oa>free_for_read</oa></addata></record>
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source BMJ; BMJ Journals (Open Access); Publicly Available Content (ProQuest); PubMed Central
subjects Adult
Births
Cerebral palsy
Cerebral Palsy - epidemiology
Child
developmental neurology & neurodisability
Epidemiology
Etiology
Humans
Longitudinal Studies
Neurology
Pediatrics
perinatology
Pilot Projects
Prevalence
Provinces
public health
Rehabilitation
rehabilitation medicine
Risk factors
Sri Lanka - epidemiology
Surveillance
Teaching hospitals
title Protocol for the Sri Lankan Cerebral Palsy Register pilot study
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