Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood

Background Previous natural history studies have advanced the understanding of sickle cell disease (SCD), but generally have not included sufficient lifespan data or investigation of the role of genetics in clinical outcomes, and have often occurred before the widespread use of disease‐modifying the...

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Veröffentlicht in:Pediatric blood & cancer 2018-09, Vol.65 (9), p.e27228-n/a
Hauptverfasser: Hankins, Jane S., Estepp, Jeremie H., Hodges, Jason R., Villavicencio, Martha A., Robison, Leslie L., Weiss, Mitchell J., Kang, Guolian, Schreiber, Jane E., Porter, Jerlym S., Kaste, Sue C., Saving, Kay L., Bryant, Paulette C., Deyo, Jeffrey E., Nottage, Kerri A., King, Allison A., Brandow, Amanda M., Lebensburger, Jeffrey D., Adesina, Oyebimpe, Chou, Stella T., Zemel, Babette S., Smeltzer, Matthew P., Wang, Winfred C., Gurney, James G.
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container_end_page n/a
container_issue 9
container_start_page e27228
container_title Pediatric blood & cancer
container_volume 65
creator Hankins, Jane S.
Estepp, Jeremie H.
Hodges, Jason R.
Villavicencio, Martha A.
Robison, Leslie L.
Weiss, Mitchell J.
Kang, Guolian
Schreiber, Jane E.
Porter, Jerlym S.
Kaste, Sue C.
Saving, Kay L.
Bryant, Paulette C.
Deyo, Jeffrey E.
Nottage, Kerri A.
King, Allison A.
Brandow, Amanda M.
Lebensburger, Jeffrey D.
Adesina, Oyebimpe
Chou, Stella T.
Zemel, Babette S.
Smeltzer, Matthew P.
Wang, Winfred C.
Gurney, James G.
description Background Previous natural history studies have advanced the understanding of sickle cell disease (SCD), but generally have not included sufficient lifespan data or investigation of the role of genetics in clinical outcomes, and have often occurred before the widespread use of disease‐modifying therapies, such as hydroxyurea and chronic erythrocyte transfusions. To further advance knowledge of SCD, St. Jude Children's Research Hospital established the Sickle Cell Clinical Research and Intervention Program (SCCRIP), to conduct research in a clinically evaluated cohort of individuals with SCD across their lifetime. Procedures Initiated in 2014, the SCCRIP study prospectively recruits patients diagnosed with SCD and includes retrospective and longitudinal collection of clinical, neurocognitive, geospatial, psychosocial, and health outcomes data. Biological samples are banked for future genomics and proteomics studies. The organizational structure of SCCRIP is based upon organ/system‐specific working groups and is opened to the research community for partnerships. Results As of August 2017, 1,044 (92.3% of eligible) patients with SCD have enrolled in the study (860 children and 184 adults), with 11,915 person‐years of observation. Population demographics included mean age at last visit of 11.3 years (range 0.7–30.1), 49.8% females, 57.7% treated with hydroxyurea, 8.5% treated with monthly transfusions, and 62.9% hemoglobin (Hb) SS or HbSB0‐thalassemia, 25.7% HbSC, 8.4% HbsB+‐Thalassemia, 1.7% HbS/HPFH, and 1.2% other. Conclusions The SCCRIP cohort will provide a rich resource for the conduct of high impact multidisciplinary research in SCD.
doi_str_mv 10.1002/pbc.27228
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To further advance knowledge of SCD, St. Jude Children's Research Hospital established the Sickle Cell Clinical Research and Intervention Program (SCCRIP), to conduct research in a clinically evaluated cohort of individuals with SCD across their lifetime. Procedures Initiated in 2014, the SCCRIP study prospectively recruits patients diagnosed with SCD and includes retrospective and longitudinal collection of clinical, neurocognitive, geospatial, psychosocial, and health outcomes data. Biological samples are banked for future genomics and proteomics studies. The organizational structure of SCCRIP is based upon organ/system‐specific working groups and is opened to the research community for partnerships. Results As of August 2017, 1,044 (92.3% of eligible) patients with SCD have enrolled in the study (860 children and 184 adults), with 11,915 person‐years of observation. Population demographics included mean age at last visit of 11.3 years (range 0.7–30.1), 49.8% females, 57.7% treated with hydroxyurea, 8.5% treated with monthly transfusions, and 62.9% hemoglobin (Hb) SS or HbSB0‐thalassemia, 25.7% HbSC, 8.4% HbsB+‐Thalassemia, 1.7% HbS/HPFH, and 1.2% other. Conclusions The SCCRIP cohort will provide a rich resource for the conduct of high impact multidisciplinary research in SCD.</description><identifier>ISSN: 1545-5009</identifier><identifier>EISSN: 1545-5017</identifier><identifier>DOI: 10.1002/pbc.27228</identifier><identifier>PMID: 29797644</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; Adult ; Anemia, Sickle Cell - genetics ; Anemia, Sickle Cell - mortality ; Anemia, Sickle Cell - therapy ; Biological properties ; Biological samples ; Biological Specimen Banks - organization &amp; administration ; Blood Transfusion ; Body Fluids ; Child ; Child, Preschool ; Children ; Cognition ; Cohort analysis ; Demographics ; Demography ; Disease Progression ; disease‐modifying therapy ; Female ; Females ; Follow-Up Studies ; Genetics ; Genomics ; Genotype ; Hematology ; Hemoglobin ; Hemoglobinopathies - genetics ; Humans ; Hydroxyurea ; Hydroxyurea - therapeutic use ; Infant ; Informed Consent ; Life span ; Longevity ; Longitudinal Studies ; Male ; Multidisciplinary research ; natural history ; Oncology ; Organizational structure ; Partnerships ; Patient Selection ; Pediatrics ; Prospective Studies ; Proteomics ; Research Design ; Sampling Studies ; sickle cell anemia ; Sickle cell disease ; Thalassemia ; United States - epidemiology</subject><ispartof>Pediatric blood &amp; cancer, 2018-09, Vol.65 (9), p.e27228-n/a</ispartof><rights>2018 Wiley Periodicals, Inc.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3538-5a8de3336896dcc6e3bc4c8e87b72eb372f16978625354f3554618535d2f22d33</citedby><cites>FETCH-LOGICAL-c3538-5a8de3336896dcc6e3bc4c8e87b72eb372f16978625354f3554618535d2f22d33</cites><orcidid>0000-0003-4439-7321</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpbc.27228$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpbc.27228$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29797644$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hankins, Jane S.</creatorcontrib><creatorcontrib>Estepp, Jeremie H.</creatorcontrib><creatorcontrib>Hodges, Jason R.</creatorcontrib><creatorcontrib>Villavicencio, Martha A.</creatorcontrib><creatorcontrib>Robison, Leslie L.</creatorcontrib><creatorcontrib>Weiss, Mitchell J.</creatorcontrib><creatorcontrib>Kang, Guolian</creatorcontrib><creatorcontrib>Schreiber, Jane E.</creatorcontrib><creatorcontrib>Porter, Jerlym S.</creatorcontrib><creatorcontrib>Kaste, Sue C.</creatorcontrib><creatorcontrib>Saving, Kay L.</creatorcontrib><creatorcontrib>Bryant, Paulette C.</creatorcontrib><creatorcontrib>Deyo, Jeffrey E.</creatorcontrib><creatorcontrib>Nottage, Kerri A.</creatorcontrib><creatorcontrib>King, Allison A.</creatorcontrib><creatorcontrib>Brandow, Amanda M.</creatorcontrib><creatorcontrib>Lebensburger, Jeffrey D.</creatorcontrib><creatorcontrib>Adesina, Oyebimpe</creatorcontrib><creatorcontrib>Chou, Stella T.</creatorcontrib><creatorcontrib>Zemel, Babette S.</creatorcontrib><creatorcontrib>Smeltzer, Matthew P.</creatorcontrib><creatorcontrib>Wang, Winfred C.</creatorcontrib><creatorcontrib>Gurney, James G.</creatorcontrib><title>Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood</title><title>Pediatric blood &amp; cancer</title><addtitle>Pediatr Blood Cancer</addtitle><description>Background Previous natural history studies have advanced the understanding of sickle cell disease (SCD), but generally have not included sufficient lifespan data or investigation of the role of genetics in clinical outcomes, and have often occurred before the widespread use of disease‐modifying therapies, such as hydroxyurea and chronic erythrocyte transfusions. To further advance knowledge of SCD, St. Jude Children's Research Hospital established the Sickle Cell Clinical Research and Intervention Program (SCCRIP), to conduct research in a clinically evaluated cohort of individuals with SCD across their lifetime. Procedures Initiated in 2014, the SCCRIP study prospectively recruits patients diagnosed with SCD and includes retrospective and longitudinal collection of clinical, neurocognitive, geospatial, psychosocial, and health outcomes data. Biological samples are banked for future genomics and proteomics studies. The organizational structure of SCCRIP is based upon organ/system‐specific working groups and is opened to the research community for partnerships. Results As of August 2017, 1,044 (92.3% of eligible) patients with SCD have enrolled in the study (860 children and 184 adults), with 11,915 person‐years of observation. Population demographics included mean age at last visit of 11.3 years (range 0.7–30.1), 49.8% females, 57.7% treated with hydroxyurea, 8.5% treated with monthly transfusions, and 62.9% hemoglobin (Hb) SS or HbSB0‐thalassemia, 25.7% HbSC, 8.4% HbsB+‐Thalassemia, 1.7% HbS/HPFH, and 1.2% other. Conclusions The SCCRIP cohort will provide a rich resource for the conduct of high impact multidisciplinary research in SCD.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Anemia, Sickle Cell - genetics</subject><subject>Anemia, Sickle Cell - mortality</subject><subject>Anemia, Sickle Cell - therapy</subject><subject>Biological properties</subject><subject>Biological samples</subject><subject>Biological Specimen Banks - organization &amp; administration</subject><subject>Blood Transfusion</subject><subject>Body Fluids</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Children</subject><subject>Cognition</subject><subject>Cohort analysis</subject><subject>Demographics</subject><subject>Demography</subject><subject>Disease Progression</subject><subject>disease‐modifying therapy</subject><subject>Female</subject><subject>Females</subject><subject>Follow-Up Studies</subject><subject>Genetics</subject><subject>Genomics</subject><subject>Genotype</subject><subject>Hematology</subject><subject>Hemoglobin</subject><subject>Hemoglobinopathies - genetics</subject><subject>Humans</subject><subject>Hydroxyurea</subject><subject>Hydroxyurea - therapeutic use</subject><subject>Infant</subject><subject>Informed Consent</subject><subject>Life span</subject><subject>Longevity</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>Multidisciplinary research</subject><subject>natural history</subject><subject>Oncology</subject><subject>Organizational structure</subject><subject>Partnerships</subject><subject>Patient Selection</subject><subject>Pediatrics</subject><subject>Prospective Studies</subject><subject>Proteomics</subject><subject>Research Design</subject><subject>Sampling Studies</subject><subject>sickle cell anemia</subject><subject>Sickle cell disease</subject><subject>Thalassemia</subject><subject>United States - epidemiology</subject><issn>1545-5009</issn><issn>1545-5017</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kcFu1DAQhiMEoqVw4AWQJS7tYVvHjmOHW4mgrFSpqxbOkWNPui6OvbUd0L4PD4rTlB6QeprR6JtPv_QXxfsSn5YYk7Ndr04JJ0S8KA5LVrEVwyV_-bTj5qB4E-NdRmvMxOvigDS84XVVHRZ_boz6aQG1YC1qrXFGSYuuIYIMaouk02jtEoRf4JLxDm2Cvw1yRMc3bXu93px8QufImgHiTjqk_NaHhGKa9B4NPqC4yNUs1yY7I6DdbIAYZ9sQ_IjSNh9BG5mCUflZ3gIyLnkk9WTT1nv9tng1SBvh3eM8Kn58_fK9_ba6vLpYt-eXK0UZFSsmhQZKaS2aWitVA-1VpQQI3nMCPeVkKOuGi5owyqqBMlbVpci7JgMhmtKj4njx5oz3E8TUjSbO4aUDP8WO4IoRznBTZfTjf-idn4LL6TLFqcAl4yRTJwulgo8xwNDtghll2Hcl7ubqulxd91BdZj88Gqd-BP1E_usqA2cL8NtY2D9v6jaf20X5Fxs3otw</recordid><startdate>201809</startdate><enddate>201809</enddate><creator>Hankins, Jane S.</creator><creator>Estepp, Jeremie H.</creator><creator>Hodges, Jason R.</creator><creator>Villavicencio, Martha A.</creator><creator>Robison, Leslie L.</creator><creator>Weiss, Mitchell J.</creator><creator>Kang, Guolian</creator><creator>Schreiber, Jane E.</creator><creator>Porter, Jerlym S.</creator><creator>Kaste, Sue C.</creator><creator>Saving, Kay L.</creator><creator>Bryant, Paulette C.</creator><creator>Deyo, Jeffrey E.</creator><creator>Nottage, Kerri A.</creator><creator>King, Allison A.</creator><creator>Brandow, Amanda M.</creator><creator>Lebensburger, Jeffrey D.</creator><creator>Adesina, Oyebimpe</creator><creator>Chou, Stella T.</creator><creator>Zemel, Babette S.</creator><creator>Smeltzer, Matthew P.</creator><creator>Wang, Winfred C.</creator><creator>Gurney, James G.</creator><general>Wiley Subscription Services, Inc</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>7TK</scope><scope>7TO</scope><scope>8FD</scope><scope>FR3</scope><scope>H94</scope><scope>K9.</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-4439-7321</orcidid></search><sort><creationdate>201809</creationdate><title>Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood</title><author>Hankins, Jane S. ; Estepp, Jeremie H. ; Hodges, Jason R. ; Villavicencio, Martha A. ; Robison, Leslie L. ; Weiss, Mitchell J. ; Kang, Guolian ; Schreiber, Jane E. ; Porter, Jerlym S. ; Kaste, Sue C. ; Saving, Kay L. ; Bryant, Paulette C. ; Deyo, Jeffrey E. ; Nottage, Kerri A. ; King, Allison A. ; Brandow, Amanda M. ; Lebensburger, Jeffrey D. ; Adesina, Oyebimpe ; Chou, Stella T. ; Zemel, Babette S. ; Smeltzer, Matthew P. ; Wang, Winfred C. ; Gurney, James G.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3538-5a8de3336896dcc6e3bc4c8e87b72eb372f16978625354f3554618535d2f22d33</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Anemia, Sickle Cell - genetics</topic><topic>Anemia, Sickle Cell - mortality</topic><topic>Anemia, Sickle Cell - therapy</topic><topic>Biological properties</topic><topic>Biological samples</topic><topic>Biological Specimen Banks - organization &amp; administration</topic><topic>Blood Transfusion</topic><topic>Body Fluids</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Children</topic><topic>Cognition</topic><topic>Cohort analysis</topic><topic>Demographics</topic><topic>Demography</topic><topic>Disease Progression</topic><topic>disease‐modifying therapy</topic><topic>Female</topic><topic>Females</topic><topic>Follow-Up Studies</topic><topic>Genetics</topic><topic>Genomics</topic><topic>Genotype</topic><topic>Hematology</topic><topic>Hemoglobin</topic><topic>Hemoglobinopathies - genetics</topic><topic>Humans</topic><topic>Hydroxyurea</topic><topic>Hydroxyurea - therapeutic use</topic><topic>Infant</topic><topic>Informed Consent</topic><topic>Life span</topic><topic>Longevity</topic><topic>Longitudinal Studies</topic><topic>Male</topic><topic>Multidisciplinary research</topic><topic>natural history</topic><topic>Oncology</topic><topic>Organizational structure</topic><topic>Partnerships</topic><topic>Patient Selection</topic><topic>Pediatrics</topic><topic>Prospective Studies</topic><topic>Proteomics</topic><topic>Research Design</topic><topic>Sampling Studies</topic><topic>sickle cell anemia</topic><topic>Sickle cell disease</topic><topic>Thalassemia</topic><topic>United States - epidemiology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hankins, Jane S.</creatorcontrib><creatorcontrib>Estepp, Jeremie H.</creatorcontrib><creatorcontrib>Hodges, Jason R.</creatorcontrib><creatorcontrib>Villavicencio, Martha A.</creatorcontrib><creatorcontrib>Robison, Leslie L.</creatorcontrib><creatorcontrib>Weiss, Mitchell J.</creatorcontrib><creatorcontrib>Kang, Guolian</creatorcontrib><creatorcontrib>Schreiber, Jane E.</creatorcontrib><creatorcontrib>Porter, Jerlym S.</creatorcontrib><creatorcontrib>Kaste, Sue C.</creatorcontrib><creatorcontrib>Saving, Kay L.</creatorcontrib><creatorcontrib>Bryant, Paulette C.</creatorcontrib><creatorcontrib>Deyo, Jeffrey E.</creatorcontrib><creatorcontrib>Nottage, Kerri A.</creatorcontrib><creatorcontrib>King, Allison A.</creatorcontrib><creatorcontrib>Brandow, Amanda M.</creatorcontrib><creatorcontrib>Lebensburger, Jeffrey D.</creatorcontrib><creatorcontrib>Adesina, Oyebimpe</creatorcontrib><creatorcontrib>Chou, Stella T.</creatorcontrib><creatorcontrib>Zemel, Babette S.</creatorcontrib><creatorcontrib>Smeltzer, Matthew P.</creatorcontrib><creatorcontrib>Wang, Winfred C.</creatorcontrib><creatorcontrib>Gurney, James G.</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>Neurosciences Abstracts</collection><collection>Oncogenes and Growth Factors Abstracts</collection><collection>Technology Research Database</collection><collection>Engineering Research Database</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health &amp; Medical Complete (Alumni)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Pediatric blood &amp; cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hankins, Jane S.</au><au>Estepp, Jeremie H.</au><au>Hodges, Jason R.</au><au>Villavicencio, Martha A.</au><au>Robison, Leslie L.</au><au>Weiss, Mitchell J.</au><au>Kang, Guolian</au><au>Schreiber, Jane E.</au><au>Porter, Jerlym S.</au><au>Kaste, Sue C.</au><au>Saving, Kay L.</au><au>Bryant, Paulette C.</au><au>Deyo, Jeffrey E.</au><au>Nottage, Kerri A.</au><au>King, Allison A.</au><au>Brandow, Amanda M.</au><au>Lebensburger, Jeffrey D.</au><au>Adesina, Oyebimpe</au><au>Chou, Stella T.</au><au>Zemel, Babette S.</au><au>Smeltzer, Matthew P.</au><au>Wang, Winfred C.</au><au>Gurney, James G.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood</atitle><jtitle>Pediatric blood &amp; cancer</jtitle><addtitle>Pediatr Blood Cancer</addtitle><date>2018-09</date><risdate>2018</risdate><volume>65</volume><issue>9</issue><spage>e27228</spage><epage>n/a</epage><pages>e27228-n/a</pages><issn>1545-5009</issn><eissn>1545-5017</eissn><abstract>Background Previous natural history studies have advanced the understanding of sickle cell disease (SCD), but generally have not included sufficient lifespan data or investigation of the role of genetics in clinical outcomes, and have often occurred before the widespread use of disease‐modifying therapies, such as hydroxyurea and chronic erythrocyte transfusions. To further advance knowledge of SCD, St. Jude Children's Research Hospital established the Sickle Cell Clinical Research and Intervention Program (SCCRIP), to conduct research in a clinically evaluated cohort of individuals with SCD across their lifetime. Procedures Initiated in 2014, the SCCRIP study prospectively recruits patients diagnosed with SCD and includes retrospective and longitudinal collection of clinical, neurocognitive, geospatial, psychosocial, and health outcomes data. Biological samples are banked for future genomics and proteomics studies. The organizational structure of SCCRIP is based upon organ/system‐specific working groups and is opened to the research community for partnerships. Results As of August 2017, 1,044 (92.3% of eligible) patients with SCD have enrolled in the study (860 children and 184 adults), with 11,915 person‐years of observation. Population demographics included mean age at last visit of 11.3 years (range 0.7–30.1), 49.8% females, 57.7% treated with hydroxyurea, 8.5% treated with monthly transfusions, and 62.9% hemoglobin (Hb) SS or HbSB0‐thalassemia, 25.7% HbSC, 8.4% HbsB+‐Thalassemia, 1.7% HbS/HPFH, and 1.2% other. Conclusions The SCCRIP cohort will provide a rich resource for the conduct of high impact multidisciplinary research in SCD.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>29797644</pmid><doi>10.1002/pbc.27228</doi><tpages>12</tpages><orcidid>https://orcid.org/0000-0003-4439-7321</orcidid></addata></record>
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ispartof Pediatric blood & cancer, 2018-09, Vol.65 (9), p.e27228-n/a
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1545-5017
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source MEDLINE; Wiley Online Library Journals Frontfile Complete
subjects Adolescent
Adult
Anemia, Sickle Cell - genetics
Anemia, Sickle Cell - mortality
Anemia, Sickle Cell - therapy
Biological properties
Biological samples
Biological Specimen Banks - organization & administration
Blood Transfusion
Body Fluids
Child
Child, Preschool
Children
Cognition
Cohort analysis
Demographics
Demography
Disease Progression
disease‐modifying therapy
Female
Females
Follow-Up Studies
Genetics
Genomics
Genotype
Hematology
Hemoglobin
Hemoglobinopathies - genetics
Humans
Hydroxyurea
Hydroxyurea - therapeutic use
Infant
Informed Consent
Life span
Longevity
Longitudinal Studies
Male
Multidisciplinary research
natural history
Oncology
Organizational structure
Partnerships
Patient Selection
Pediatrics
Prospective Studies
Proteomics
Research Design
Sampling Studies
sickle cell anemia
Sickle cell disease
Thalassemia
United States - epidemiology
title Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood
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