{"title":"Commentary of Early Weight Gain in Infants With Cleft Lip and Palate Treated With and Without Nasoalveolar Molding: A Retrospective Study.","authors":"Renato da Silva Freitas, Maria Cecília Closs Ono","doi":"10.1177/10556656211022912","DOIUrl":"https://doi.org/10.1177/10556656211022912","url":null,"abstract":"Appropriate feeding and consequent adequate weight gain are one of the first concerns about any infants after birth. Not only in the newborn but as a physiological process, feeding requires perfect coordination of breathing, sucking, and swallowing (Merrow, 2016). This ability is easily disturbed by any neurological or anatomical distress. Feeding disorders include prolonged feeding times, reduced oral intake, unsafe oral feeding, and precipitation of respiratory decompensation (da Silva Freitas et al., 2012). The incidence of feeding problems in infants with craniofacial malformation is high, and in cleft lip/palate rates vary from 25% to 73% (Wiechers et al., 2020). The utilization of palatal plates has been advocated as an adjuvant for the treatment, facilitating suction and even helping the palatal arch remodeling (Phral et al. 2005). In a study performed in our center in 2012, we realized that patients with cleft have a decreased weight gain in comparison to healthy infants; however, at the end of the first year of life, this difference disappeared (da Silva Freitas et al., 2012). Palatal plates are not a standard of care in our center for any patients; however, some measures are strictly advised: support, education, integrated multidisciplinary care, and regular follow-up. When reading the paper entitled “Early Weight Gain in Infants with Cleft Lip and Palate Treated with and without nasoalveolar molding: A Retrospective Study,” we question the initial statement in third paragraph in the introduction: “it should be determined whether treatment involving the NAM appliance poses a burden on weight gain in infants with CL þ P.” As authors firstly emphasize, the proposed benefits of presurgical infant orthopedics includes facilitation of feeding. Then, they cite some previous studies that did not show positive benefits in weight gain of the patients with cleft that used nasoalveolar molding compared to standard care (Woods et al., 2019). The intention of the present study was to verify whether the utilization of the nasoalveolar appliance could be related as a negative factor in weight gain of the patients. They concluded that nasoalveolar molding showed greater weight gain curves, although the exact cause of this finding could not be related to NAM utilization. There is a question about the follow-up: the original paper (Woods et al., 2019) demonstrated the same evolution of weight gain until 1 year of age in both group (NAMþ and NAM ). Palate repair generally is performed at 12 months. Why did they decide to extend weight gain measurements until 36 months old? What should be the benefit of measure weight gain in NAMþ patients after 12 months after birth? What could the influence NAM have after stopping its use? In our point of view, there are questions about the strict need of parent’s compliance, the increased costs and morbidity (as sometimes sedation and anesthesia are necessary for appliance insertion and removal) (Grayson and Garfinkle, ","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"815-816"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211022912","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39114372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mohamed Eesa, Ehsan Hendawy, Mohammad Waheed El-Anwar
{"title":"Modified Z-Palatoplasty for Correction of Acquired Nasopharyngeal Stenosis Following Palatal Surgery: A Case Series.","authors":"Mohamed Eesa, Ehsan Hendawy, Mohammad Waheed El-Anwar","doi":"10.1177/10556656211021702","DOIUrl":"https://doi.org/10.1177/10556656211021702","url":null,"abstract":"<p><strong>Objectives: </strong>To evaluate the efficacy of a novel surgical technique in management of nasopharyngeal stenosis (NPS), describing its steps and results. <i>Study Design</i>: Prospective clinical trial.</p><p><strong>Setting: </strong>This study was conducted at the Otolaryngology, Head and Neck Surgery Department, Zagazig University.</p><p><strong>Methods: </strong>This prospective study was conducted on patients with snoring ± obstructive sleep apnea due to acquired postsurgical NPS of grade Ι and ΙΙ. New surgical repair was employed on the patients and the pre and postoperative results were statistically compared.</p><p><strong>Results: </strong>The grade of NPS improved significantly postoperatively (<i>P</i> = .00136) throughout a follow-up of 1 year. Postoperatively, there was statistically significant improvement of apnea hypopnea index (<i>P</i> = .0005), Visual Analog Scale (VAS) of nasal obstruction (<i>P</i> < .0001) and VAS of snoring (<i>P</i> < .0001). Dysphagia showed early worsening, but it improved completely at 3 months postoperatively.</p><p><strong>Conclusion: </strong>The utilized novel procedure appears effective, low cost, and easily applicable, and it does not require implants, special tools, or suture materials. Furthermore, it gives excellent results, with negligible pain, and rapid recovery without significant complications.</p><p><strong>Level of evidence: </strong>4.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"774-778"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211021702","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39093628","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Familial Pfeiffer Syndrome: Variable Manifestations and Role of Multidisciplinary Team Care.","authors":"Sarut Chaisrisawadisuk, Mark H Moore","doi":"10.1177/10556656211028505","DOIUrl":"https://doi.org/10.1177/10556656211028505","url":null,"abstract":"<p><p>Pfeiffer syndrome is one of the autosomal dominant craniofacial syndromes. Classical clinical manifestations are coronal suture synostosis causing brachycephaly, midface retrusion, airway compromise, broad thumbs, and toes. Pfeiffer syndrome type I (classic type) is associated with <i>FGFR1</i> mutation. However, wide range of clinical manifestations, with and without craniosynostosis, have been reported. Here, we present a family of Pfeiffer syndrome across 3 generations with identical <i>FGFR1</i>: c.755C>G (p.Pro252Arg) mutation. Where the members of the youngest generation have no cranial involvement. Lastly, we propose a guideline management for familial Pfeiffer syndrome management.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"817-820"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211028505","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39164986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Otto D M Kronig, Sophia A J Kronig, Léon N A Van Adrichem
{"title":"Intracranial Volume Not Correlated With Severity in Trigonocephaly.","authors":"Otto D M Kronig, Sophia A J Kronig, Léon N A Van Adrichem","doi":"10.1177/10556656211025185","DOIUrl":"https://doi.org/10.1177/10556656211025185","url":null,"abstract":"<p><strong>Objectives: </strong>Severity of trigonocephaly varies and potentially affects intracranial volume (ICV) and intracranial pressure (ICP). The aim of this study is to measure ICV in trigonocephaly patients and compare it to normative data and correlate ICV with the severity of the skull deformity according to UCSQ (Utrecht Cranial Shape Quantifier).</p><p><strong>Design: </strong>Retrospective study.</p><p><strong>Setting: </strong>Primary craniofacial center.</p><p><strong>Patients, participants: </strong>Nineteen preoperative patients with nonsyndromic trigonocephaly (age ≤12 months).</p><p><strong>Intervention: </strong>Intracranial volume was measured on preoperative computed tomography (CT) scans by manual segmentation (OsiriX Fondation). Utrecht Cranial Shape Quantifier was used to quantify the severity of the skull deformity. When present, papilledema as sign of elevated ICP was noted.</p><p><strong>Main outcome measures(s): </strong>Measured ICV was compared to Lichtenberg normative cranial volume growth curves, and Pearson correlation coefficient was used to correlate UCSQ with the ICV.</p><p><strong>Results: </strong>Mean age at CT scan was 6 months (2-11). Mean measured ICV was 842 mL (579-1124). Thirteen of h19 patients (11/15 boys and 2/4 girls) had an ICV between ±2 SD curves of Lichtenberg, 2 of 19 (1/15 boys and 1/4 girls) had an ICV less than -2 SD and 4 of 19 (3/15 boys and 1/4 girls) had an ICV greater than +2 SD. Mean UCSQ severity of trigonocephaly was 2.40 (-622.65 to 1279.75). Correlation between severity and ICV was negligible (r = -0.11). No papilledema was reported.</p><p><strong>Conclusions: </strong>Measured ICV was within normal ranges for trigonocephaly patients, in both mild and severe cases. No correlation was found between severity of trigonocephaly and ICV.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"794-799"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211025185","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39239261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Khalifa Al Alawi, Sultan Al Shaqsi, Mouzan Al Ghaithi
{"title":"Awareness of Orofacial Clefts in the Sultanate of Oman.","authors":"Khalifa Al Alawi, Sultan Al Shaqsi, Mouzan Al Ghaithi","doi":"10.1177/10556656211024477","DOIUrl":"https://doi.org/10.1177/10556656211024477","url":null,"abstract":"<p><strong>Introduction: </strong>Cleft lip and/or palate (CL/P) is the most common craniofacial anomaly. In Oman, the incidence of CL/P is estimated to be 1.5 per 1000 live births per year. Knowledge, awareness, and attitude toward CL/P help to optimize the management of the condition and reduce social and emotional stress among this group of children and their family. In this survey, we assessed the public awareness, knowledge, and attitude toward this deformity in the Sultanate of Oman.</p><p><strong>Method: </strong>A cross-sectional study was conducted using validated questionnaire that was distributed using Google forms.</p><p><strong>Result: </strong>A total of 739 participants completed the survey. The majority is aware of cleft lip (86.7%) and palate (63.2%). In general, attitude toward patients with CL/P was positive. Females had higher knowledge compared to males, 54.4% and 32.9%, respectively. Online resources were the main source of information.</p><p><strong>Conclusion: </strong>There are variations in knowledge, awareness, and attitude toward CL/P among participants. Omani population needs to be educated more about CL/P, its complications if not treated, and the available treatment.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"708-714"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211024477","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39239262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Morphometric Variations and Growth Analysis of the Side Face Profiles of Chinese Children.","authors":"Haijun Li, Huimin Chen, Liming Liu, Yujie Zhao","doi":"10.1177/10556656211022919","DOIUrl":"https://doi.org/10.1177/10556656211022919","url":null,"abstract":"<p><strong>Objective: </strong>We aim to use geometric morphometric methods to analyze the contours of the side face profile and its variations in 116 children in Hunan province, China, in order to reveal common morphological features and growth of the side face profiles of Chinese children.</p><p><strong>Design: </strong>We photographed the side faces with consistent standardized procedures. Thirty-seven landmarks were recorded, which comprehensively reflected the facial sagittal plane. The collection of coordinate data regarding landmarks was conducted by tpsDig software. Other analyses, such as average shape analysis, principal component analysis, variations analysis, and allometric analysis, were conducted using tpsRelw and tpsRegr.</p><p><strong>Result: </strong>Based on the 37 landmarks, principal component analysis was used on the profiles of boys and girls. The result shows that PC1 and PC2 account for 35.46% and 27.44% of the side face contour variations, respectively. There is no significant difference in the side profiles of boys and girls. Overlapping distributions between the boys and girls occurred. A significant difference occurs when principal component analysis was used on the side profiles of children and adults.</p><p><strong>Conclusions: </strong>There is a significant difference in the side face profiles between adult males and females. Adult males have a higher brow (the 8th landmark) than females, and adult females have a more curved forehead. However, the side face profiles of boys and girls around 10 years of age are generally similar, which suggests that the significant difference in side face profiles between adult males and females may be formed after the age of 10. This study is of great significance for both orthodontists and pediatricians to use different norms for kids and adults and different norms for males and females for each of those age groups.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"732-740"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211022919","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39232307","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Influence of Gender, Dispositional Optimism, and Coping Strategies on Appearance-Related Distress Among Swedish Adults With Cleft Lip and Palate.","authors":"Anna Paganini, Martin Persson, Hans Mark","doi":"10.1177/10556656211025196","DOIUrl":"https://doi.org/10.1177/10556656211025196","url":null,"abstract":"<p><strong>Objective: </strong>To investigate the influence of gender, dispositional optimism, and coping strategies on appearance-related distress among individuals with unilateral cleft lip and palate (UCLP).</p><p><strong>Design: </strong>Cross-sectional design with self-report questionnaires analyzed primarily with Spearman correlations (<i>r</i><sub>s</sub>) and multivariate regression analyses.</p><p><strong>Setting: </strong>A tertiary cleft center in Sweden.</p><p><strong>Participants: </strong>Eighty individuals with UCLP born 1966 to 1986. The mean age for men (n = 50) and women (n = 30) was 38.8 and 37.4 years, respectively.</p><p><strong>Main outcome measures: </strong>The Derriford Appearance Scale 24 measured appearance-related distress, the Life Orientation Test-Revised, short version measured dispositional optimism and pessimism, and the Coping Orientation to Problems Experienced, short version included 14 coping strategies.</p><p><strong>Results: </strong>Women had higher appearance-related distress than men, which was significantly (<i>P</i> < .05) related to self-blame (<i>r</i><sub>s</sub> = 0.59), pessimism (<i>r</i><sub>s</sub> = 0.59), and low optimism (<i>r</i><sub>s</sub> = -0.56). Men's appearance-related distress was significantly associated with low active coping (<i>r</i><sub>s</sub> = 0.35), low use of emotional support (<i>r</i><sub>s</sub> = 0.29), denial (<i>r</i><sub>s</sub> = 0.39), behavioral disengagement (<i>r</i><sub>s</sub> = 0.41), and pessimism (<i>r</i><sub>s</sub> = 0.28). The only significant gender interaction reflected greater impact of optimism in reducing appearance-related distress for women (β = -0.06).</p><p><strong>Conclusions: </strong>This study showed that high levels of dispositional optimism decrease appearance-related distress, particularly for women. The coping strategies used differed between men and women, and the results suggest that both gender and psychosocial facto <i>r</i><sub>s</sub> need to be considered in regard to appearance-related distress among individuals with UCLP in both clinical and research settings. A possible way to decrease distress is to strengthen positive coping strategies and dispositional optimism.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"715-723"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211025196","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39241189","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Michael Carr, Michaela Skarlicki, Sheryl Palm, Marija Bucevska, Jeffrey Bone, Arun K Gosain, Jugpal S Arneja
{"title":"Through-and-Through Dissection of the Soft Palate for Pharyngeal Flap Inset: A \"Good-Fast-Cheap\" Technique for Any Etiology of Velopharyngeal Incompetence.","authors":"Michael Carr, Michaela Skarlicki, Sheryl Palm, Marija Bucevska, Jeffrey Bone, Arun K Gosain, Jugpal S Arneja","doi":"10.1177/10556656211021738","DOIUrl":"https://doi.org/10.1177/10556656211021738","url":null,"abstract":"Objective: To determine the efficacy and resource utilization of through-and-through dissection of the soft palate for pharyngeal flap inset for velopharyngeal incompetence (VPI) of any indication. Design: Retrospective review. Setting: Tertiary care center. Patients: Thirty patients were included. Inclusion criteria were diagnosis of severe VPI based on perceptual speech assessment, confirmed by nasoendoscopy or videofluoroscopy; VPI managed surgically with modified pharyngeal flap with through-and-through dissection of the soft palate; and minimum 6 months follow-up. Patients with 22q11.2 deletion syndrome were excluded. Intervention: Modified pharyngeal flap with through-and-through dissection of the soft palate. Main Outcome Measure(s): Velopharyngeal competence and speech assessed using the Speech-Language Pathologist 3 scale. Results: The median preoperative speech score was 11 of 13 (range, 7 to 13), which improved significantly to a median postoperative score of 1 of 13 (range 0-7; P < .001). Velopharyngeal competence was restored in 25 (83%) patients, borderline competence in 3 (10%), and VPI persisted in 2 (7%) patients. Complications included 1 palatal fistula that required elective revision and 1 mild obstructive sleep apnea that did not require flap takedown. Median skin-to-skin operative time was 73.5 minutes, and median length of stay (LOS) was 50.3 hours. Conclusions: This technique allows direct visualization of flap placement and largely restores velopharyngeal competence irrespective of VPI etiology, with low complication rates. Short operative time and LOS extend the value proposition, making this technique not only efficacious but also a resource-efficient option for surgical management of severe VPI.","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"785-793"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211021738","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39239868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Diana S Jodeh, Jacqueline M Ross, Maria Leszczynska, Fatima Qamar, Rachel L Dawkins, James J Cray, S Alex Rottgers
{"title":"Determination of Ethnic Variation in Infant Nasolabial Anthropometry Using 3D Photographs: Implications for Bilateral Cleft Lip Nasal Correction.","authors":"Diana S Jodeh, Jacqueline M Ross, Maria Leszczynska, Fatima Qamar, Rachel L Dawkins, James J Cray, S Alex Rottgers","doi":"10.1177/10556656211024470","DOIUrl":"https://doi.org/10.1177/10556656211024470","url":null,"abstract":"<p><strong>Objective: </strong>We aimed to assess significant ethnic variabilities in infants' nasolabial anthropometry to motivate variations in surgical correction of a synchronous bilateral cleft lip/nasal anomaly, specifically whether a long columella is a European feature, therefore accepting a short columella and/or delayed columellar lengthening suitable for reconstruction in ethnic patients.</p><p><strong>Methods: </strong>Thirty-three infants without craniofacial pathology (10 African American [AA], 7 Hispanic [H], and 16 of European descent [C]), ages 3 to 8 months, presenting to the Johns Hopkins All Children's general pediatric clinic were recruited. Four separate 3D photographs (2 submental and frontal views each) were taken using the Vectra H1 handheld camera (Canfield Imaging). Eighteen linear facial distances were measured using Mirror 3D analysis (Canfield Imaging Systems). Difference between ethnicities was measured using analysis of variance with the Bonferroni/Dunn post hoc comparisons. Pearson correlation was employed for interrater reliability. All statistical analyses were carried out using SPSS version 21.0 (IBM Corp), with statistical significance set at <i>P</i> < .05.</p><p><strong>Results: </strong>Nasal projection (sn-prn) and columella length (sn-c) did not differ significantly between groups (<i>P</i> = .9). Significant differences were seen between ethnic groups in nasal width (sbal-sbal [C-AA; <i>P</i> = .02]; ac-ac [C-AA; <i>P</i> = .00; H-AA; <i>P</i> = .04]; al-al [C-AA; <i>P</i> = .00; H-AA; <i>P</i> = .001]) and labial length (sn-ls [C-AA; <i>P</i> = .041]; sn-sto [C-AA; <i>P</i> = .005]; Cphs-Cphi L [C-AA; <i>P</i> = .013]; Cphs-Cphi R [C-AA; <i>P</i> = .015]). Interrater reliability was good to excellent and significantly correlated for all measures.</p><p><strong>Conclusions: </strong>African American infants exhibited wider noses and longer lips. No difference was noted in nasal projection or columella length, indicating that these structures should be corrected during the primary cleft lip and nasal repair for all patients and should not be deferred to secondary correction.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"693-700"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211024470","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39235400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research.","authors":"Grace Carlock, Kelly Manning, Elizabeth J Leslie","doi":"10.1177/10556656211024484","DOIUrl":"https://doi.org/10.1177/10556656211024484","url":null,"abstract":"<p><strong>Objective: </strong>This study assessed the feasibility of unpaid social media advertising to recruit participants affected with an orofacial cleft (OFC) for a genetic study.</p><p><strong>Design: </strong>This is a retrospective analysis of recruitment based on enrollment and participation in a genetic study. Participants completed a series of enrollment surveys, provided saliva samples, and completed postparticipation feedback surveys.</p><p><strong>Participants: </strong>Participants were eligible if they or a minor in their care were affected by an OFC, the affected participant was not adopted, and the mother of the affected individual had not taken antiseizure medication during pregnancy.</p><p><strong>Main outcome measures: </strong>Success of recruitment was evaluated from the number of enrolled participants and sample return rate.</p><p><strong>Results: </strong>In the first 12 months of recruitment, 313 individuals completed initial screening surveys; of these, 306 participants were eligible. A total of 263 individuals completed all online surveys and were sent DNA sample kits. One hundred sixty-two subject DNA samples were returned within 12 months of sending, for a return rate of 62%. Approximately two-thirds (66.3%) of all returned samples were sent back within the first 6 weeks after receiving DNA kits.</p><p><strong>Conclusions: </strong>Unpaid social media advertising enabled the recruitment of a large cohort of participants in a short time (12 months). The resulting study population was limited in racial and ethnic diversity, suggesting that other recruitment strategies will be needed for studies seeking specific demographic or socioeconomic groups. Nonetheless, social media recruitment was efficient and effective for recruiting participants for a genetic study in comparison to traditional clinic-based modes of recruitment.</p>","PeriodicalId":520794,"journal":{"name":"The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association","volume":" ","pages":"701-707"},"PeriodicalIF":1.1,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/10556656211024484","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39088629","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}