Internet-based enrollment of a myositis patient cohort—a national experience
Introduction Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment me...
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| Veröffentlicht in: | Clinical rheumatology 2024-10, Vol.43 (10), p.3157-3166 |
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| creator | Silva, Raisa Lomanto Keret, Shiri Chandra, Tanya Sharma, Akanksha Pongtarakulpanit, Nantakarn Moghadam-Kia, Siamak Oddis, Chester V. Aggarwal, Rohit |
| description | Introduction
Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort.
Methods
The “Myositis Patient Centered Tele-Research” (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited.
Results
A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (
p
= 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states.
Conclusions
Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.
Key Points
• In this study, we demonstrate the high rate of recruitment for an idiopathic inflammatory myopathy (IIM) cohort through remote and online methods.
• Patient-support organizations were successful partners in reaching and recruiting IIM participants.
• Online recruitment is viable and may be a pathway to gather participants from a wider geographical area when compared to traditional recruitment. |
| doi_str_mv | 10.1007/s10067-024-07091-3 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_3153858397</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3097492088</sourcerecordid><originalsourceid>FETCH-LOGICAL-c289t-a5cf1bda52b8a77a356c0709c255321672e6783b5ba9335d2307a85e01e793e63</originalsourceid><addsrcrecordid>eNqFkbFOHDEQhq0oKByQF6BAK6VJ4zD22Gu7RIgEJAQN1JZ3by4s2l1f7D0p1_EQeUKeBF8OiEQRGlua-ea3Rx9jhwK-CQBznMtZGw5ScTDgBMcPbCYUKu6cch_ZDIwBjsLZXbaX8z0ASOvEJ7aLTlhjlJqxq4txojTSxJuQaV7RmGLfDzROVVxUoRrWMXdTl6tlmLpNtY13MU2PD39CNZZSHENf0e8lpdJt6YDtLEKf6fPzvc9uv5_dnJ7zy-sfF6cnl7wtP5h40O1CNPOgZWODMQF13W5WaKXWKEVtJNXGYqOb4BD1XCKYYDWBIOOQatxnX7e5yxR_rShPfuhyS30fRoqr7FFotNqiM--j4IxyEqwt6Jc36H1cpbLhJlAIVKCcKJTcUm2KOSda-GXqhpDWXoDfiPFbMb6I8X_FeCxDR8_Rq2ag-evIi4kC4BbIpTX-pPTv7f_EPgFjWZgF</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>3111340491</pqid></control><display><type>article</type><title>Internet-based enrollment of a myositis patient cohort—a national experience</title><source>MEDLINE</source><source>SpringerLink Journals</source><creator>Silva, Raisa Lomanto ; Keret, Shiri ; Chandra, Tanya ; Sharma, Akanksha ; Pongtarakulpanit, Nantakarn ; Moghadam-Kia, Siamak ; Oddis, Chester V. ; Aggarwal, Rohit</creator><creatorcontrib>Silva, Raisa Lomanto ; Keret, Shiri ; Chandra, Tanya ; Sharma, Akanksha ; Pongtarakulpanit, Nantakarn ; Moghadam-Kia, Siamak ; Oddis, Chester V. ; Aggarwal, Rohit</creatorcontrib><description>Introduction
Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort.
Methods
The “Myositis Patient Centered Tele-Research” (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited.
Results
A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (
p
= 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states.
Conclusions
Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.
Key Points
• In this study, we demonstrate the high rate of recruitment for an idiopathic inflammatory myopathy (IIM) cohort through remote and online methods.
• Patient-support organizations were successful partners in reaching and recruiting IIM participants.
• Online recruitment is viable and may be a pathway to gather participants from a wider geographical area when compared to traditional recruitment.</description><identifier>ISSN: 0770-3198</identifier><identifier>ISSN: 1434-9949</identifier><identifier>EISSN: 1434-9949</identifier><identifier>DOI: 10.1007/s10067-024-07091-3</identifier><identifier>PMID: 39187744</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>Adult ; Aged ; Clinical trials ; Consent ; e-mail ; Electronic Mail ; Electronic mail systems ; Enrollments ; Female ; Humans ; Immunology ; Internal medicine ; Internet ; Male ; Medical records ; Medicine ; Medicine & Public Health ; Middle Aged ; Myopathy ; Myositis ; Myositis - therapy ; observational studies ; Original Article ; Patient Selection ; Patients ; Population studies ; Prospective Studies ; Questionnaires ; Recruitment ; Registration ; Rheumatology ; Social Media ; Social networks ; United States</subject><ispartof>Clinical rheumatology, 2024-10, Vol.43 (10), p.3157-3166</ispartof><rights>The Author(s), under exclusive licence to International League of Associations for Rheumatology (ILAR) 2024. Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</rights><rights>2024. The Author(s), under exclusive licence to International League of Associations for Rheumatology (ILAR).</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c289t-a5cf1bda52b8a77a356c0709c255321672e6783b5ba9335d2307a85e01e793e63</cites><orcidid>0000-0002-2830-7675</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10067-024-07091-3$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10067-024-07091-3$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,776,780,27903,27904,41467,42536,51297</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39187744$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Silva, Raisa Lomanto</creatorcontrib><creatorcontrib>Keret, Shiri</creatorcontrib><creatorcontrib>Chandra, Tanya</creatorcontrib><creatorcontrib>Sharma, Akanksha</creatorcontrib><creatorcontrib>Pongtarakulpanit, Nantakarn</creatorcontrib><creatorcontrib>Moghadam-Kia, Siamak</creatorcontrib><creatorcontrib>Oddis, Chester V.</creatorcontrib><creatorcontrib>Aggarwal, Rohit</creatorcontrib><title>Internet-based enrollment of a myositis patient cohort—a national experience</title><title>Clinical rheumatology</title><addtitle>Clin Rheumatol</addtitle><addtitle>Clin Rheumatol</addtitle><description>Introduction
Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort.
Methods
The “Myositis Patient Centered Tele-Research” (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited.
Results
A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (
p
= 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states.
Conclusions
Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.
Key Points
• In this study, we demonstrate the high rate of recruitment for an idiopathic inflammatory myopathy (IIM) cohort through remote and online methods.
• Patient-support organizations were successful partners in reaching and recruiting IIM participants.
• Online recruitment is viable and may be a pathway to gather participants from a wider geographical area when compared to traditional recruitment.</description><subject>Adult</subject><subject>Aged</subject><subject>Clinical trials</subject><subject>Consent</subject><subject>e-mail</subject><subject>Electronic Mail</subject><subject>Electronic mail systems</subject><subject>Enrollments</subject><subject>Female</subject><subject>Humans</subject><subject>Immunology</subject><subject>Internal medicine</subject><subject>Internet</subject><subject>Male</subject><subject>Medical records</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Myopathy</subject><subject>Myositis</subject><subject>Myositis - therapy</subject><subject>observational studies</subject><subject>Original Article</subject><subject>Patient Selection</subject><subject>Patients</subject><subject>Population studies</subject><subject>Prospective Studies</subject><subject>Questionnaires</subject><subject>Recruitment</subject><subject>Registration</subject><subject>Rheumatology</subject><subject>Social Media</subject><subject>Social networks</subject><subject>United States</subject><issn>0770-3198</issn><issn>1434-9949</issn><issn>1434-9949</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqFkbFOHDEQhq0oKByQF6BAK6VJ4zD22Gu7RIgEJAQN1JZ3by4s2l1f7D0p1_EQeUKeBF8OiEQRGlua-ea3Rx9jhwK-CQBznMtZGw5ScTDgBMcPbCYUKu6cch_ZDIwBjsLZXbaX8z0ASOvEJ7aLTlhjlJqxq4txojTSxJuQaV7RmGLfDzROVVxUoRrWMXdTl6tlmLpNtY13MU2PD39CNZZSHENf0e8lpdJt6YDtLEKf6fPzvc9uv5_dnJ7zy-sfF6cnl7wtP5h40O1CNPOgZWODMQF13W5WaKXWKEVtJNXGYqOb4BD1XCKYYDWBIOOQatxnX7e5yxR_rShPfuhyS30fRoqr7FFotNqiM--j4IxyEqwt6Jc36H1cpbLhJlAIVKCcKJTcUm2KOSda-GXqhpDWXoDfiPFbMb6I8X_FeCxDR8_Rq2ag-evIi4kC4BbIpTX-pPTv7f_EPgFjWZgF</recordid><startdate>20241001</startdate><enddate>20241001</enddate><creator>Silva, Raisa Lomanto</creator><creator>Keret, Shiri</creator><creator>Chandra, Tanya</creator><creator>Sharma, Akanksha</creator><creator>Pongtarakulpanit, Nantakarn</creator><creator>Moghadam-Kia, Siamak</creator><creator>Oddis, Chester V.</creator><creator>Aggarwal, Rohit</creator><general>Springer International Publishing</general><general>Springer Nature B.V</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7T5</scope><scope>H94</scope><scope>K9.</scope><scope>7X8</scope><scope>7S9</scope><scope>L.6</scope><orcidid>https://orcid.org/0000-0002-2830-7675</orcidid></search><sort><creationdate>20241001</creationdate><title>Internet-based enrollment of a myositis patient cohort—a national experience</title><author>Silva, Raisa Lomanto ; Keret, Shiri ; Chandra, Tanya ; Sharma, Akanksha ; Pongtarakulpanit, Nantakarn ; Moghadam-Kia, Siamak ; Oddis, Chester V. ; Aggarwal, Rohit</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c289t-a5cf1bda52b8a77a356c0709c255321672e6783b5ba9335d2307a85e01e793e63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Clinical trials</topic><topic>Consent</topic><topic>e-mail</topic><topic>Electronic Mail</topic><topic>Electronic mail systems</topic><topic>Enrollments</topic><topic>Female</topic><topic>Humans</topic><topic>Immunology</topic><topic>Internal medicine</topic><topic>Internet</topic><topic>Male</topic><topic>Medical records</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Myopathy</topic><topic>Myositis</topic><topic>Myositis - therapy</topic><topic>observational studies</topic><topic>Original Article</topic><topic>Patient Selection</topic><topic>Patients</topic><topic>Population studies</topic><topic>Prospective Studies</topic><topic>Questionnaires</topic><topic>Recruitment</topic><topic>Registration</topic><topic>Rheumatology</topic><topic>Social Media</topic><topic>Social networks</topic><topic>United States</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Silva, Raisa Lomanto</creatorcontrib><creatorcontrib>Keret, Shiri</creatorcontrib><creatorcontrib>Chandra, Tanya</creatorcontrib><creatorcontrib>Sharma, Akanksha</creatorcontrib><creatorcontrib>Pongtarakulpanit, Nantakarn</creatorcontrib><creatorcontrib>Moghadam-Kia, Siamak</creatorcontrib><creatorcontrib>Oddis, Chester V.</creatorcontrib><creatorcontrib>Aggarwal, Rohit</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>AGRICOLA</collection><collection>AGRICOLA - Academic</collection><jtitle>Clinical rheumatology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Silva, Raisa Lomanto</au><au>Keret, Shiri</au><au>Chandra, Tanya</au><au>Sharma, Akanksha</au><au>Pongtarakulpanit, Nantakarn</au><au>Moghadam-Kia, Siamak</au><au>Oddis, Chester V.</au><au>Aggarwal, Rohit</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Internet-based enrollment of a myositis patient cohort—a national experience</atitle><jtitle>Clinical rheumatology</jtitle><stitle>Clin Rheumatol</stitle><addtitle>Clin Rheumatol</addtitle><date>2024-10-01</date><risdate>2024</risdate><volume>43</volume><issue>10</issue><spage>3157</spage><epage>3166</epage><pages>3157-3166</pages><issn>0770-3198</issn><issn>1434-9949</issn><eissn>1434-9949</eissn><abstract>Introduction
Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort.
Methods
The “Myositis Patient Centered Tele-Research” (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited.
Results
A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (
p
= 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states.
Conclusions
Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.
Key Points
• In this study, we demonstrate the high rate of recruitment for an idiopathic inflammatory myopathy (IIM) cohort through remote and online methods.
• Patient-support organizations were successful partners in reaching and recruiting IIM participants.
• Online recruitment is viable and may be a pathway to gather participants from a wider geographical area when compared to traditional recruitment.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>39187744</pmid><doi>10.1007/s10067-024-07091-3</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-2830-7675</orcidid></addata></record> |
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| ispartof | Clinical rheumatology, 2024-10, Vol.43 (10), p.3157-3166 |
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| source | MEDLINE; SpringerLink Journals |
| subjects | Adult Aged Clinical trials Consent Electronic Mail Electronic mail systems Enrollments Female Humans Immunology Internal medicine Internet Male Medical records Medicine Medicine & Public Health Middle Aged Myopathy Myositis Myositis - therapy observational studies Original Article Patient Selection Patients Population studies Prospective Studies Questionnaires Recruitment Registration Rheumatology Social Media Social networks United States |
| title | Internet-based enrollment of a myositis patient cohort—a national experience |
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