Skip to main content
Erschienen in: BMC Pediatrics 1/2023

Open Access 01.12.2023 | Research

Iranian school-aged twin registry: preliminary reports and project progress

verfasst von: Hamidreza Abtahi, Marsa Gholamzadeh, Roza Baharii

Erschienen in: BMC Pediatrics | Ausgabe 1/2023

Abstract

Background

National Persian school-aged twin registry was established to provide a platform for twin studies. In this report, we describe defining registry characteristics, database design, and preliminary results regarding gathered data in the first phase of the registry program.

Method

Through focus group discussions, the required data elements to design the database and data collection process were defined. First, a list of twins in school-aged groups was retrieved from the electronic database of the Ministry of Education. Tehran schools were selected for the first phase of our registry. Standard “Pea-in-Pods” questionnaire and twins’ similarity questionnaires were filled out by the parents themselves in addition to demographic information. Data were analyzed using SPSS v.22.

Results

The first national school-aged twin registry was established in 2018. Firstly, the required data sets and data collection process were defined using focus group discussions. At the country level, the initial information on 189,738 students was retrieved from the national database of the Ministry of Education. They were born between 2003 and 2017, of which 94,997 are boys (50.1%) and 94,741 are girls (49.9%). Of them, a total of 5,642 pairs of school-aged twins participated in the first phase of our program. Our sample size comprised 9772 twins, 906 triples, and 92 quadruplets. The analysis of the zygosity questionnaire showed that 14% of twin pairs were identified as monozygotic twins.

Conclusion

Recruiting school-aged twins through school health assistants leads to high enrollment and decreasing costs for the twin registry. The study showed a high rate of dizygotic twins that need to be verified by twin bio-sample in the next phase of studies.
Hinweise

Supplementary Information

The online version contains supplementary material available at https://​doi.​org/​10.​1186/​s12887-023-03865-x.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Introduction

Twin-based studies are a valuable means to study the effect of genetic and environmental factors on health and disease [1]. Although identical monozygotic (MZ) twins have a similar genetic background, fraternal or dizygotic (DZ) twins share only fifty percent of their genes that usually live in the same environment. So, twin researchers can differentiate the role of genetic and environmental effects in such domains as intelligence, individual and social behavior, nutritional habits, somatic, and mental disorders. The twin registry is usually implemented at the national level which can provide a valuable database for an epidemiological study [24]. One of the first founded twin registries in the world is the Danish Twin Registry (DTR) which has known as the basis of many population-based cohort studies [5, 6]. After that national twin registries have been developed all over the world to make an increasing amount of data available [7].
Two of the main challenges of twin registries are the high cost of data entry and twin loss to follow-up [810]. The continuity of twins appearing in such research programs may vary from a few months to several years, depending on the amount of research funding and the validity of the ethical code [10, 11].
Although local twin registries have been developed in Iran since the mid-2000s by different researchers [12], the continuity of twin recruitment could not be achieved in these registries due to resource limitations. So, the National Persian twin registry was established in 2016 for all age groups supported by the Iranian Ministry of Health [9]. Due to limited enrollment of adult twins, the Persian twin registry continued in the school-aged group through schools and newborns through hospitals since 2018 [9, 13, 14]. In school-aged twins, the challenges of high registration costs and continuity of twins’ participation could be addressed with the aid of health assistants who work in schools. In this report, we describe defining registry characteristics, database design, and preliminary results regarding gathered data in the first phase of the school-aged twin registry program.
In the school-aged group, we also expected that due to the upward use of assisted reproductive technologies (ART) techniques in Iran since its establishment since 1984 has been associated with a significant increase in multiple dizygotic twins [15, 16].

Methods

This study is a descriptive qualitative study to describe the main characteristics of the registry and preliminary reports in the first phase. The details of the data collection method, school-aged twins’ enrollment process in the first phase, and the required data elements that should be recorded were determined using focus group discussions with experts. The initial analysis of gathered data is described in the following.

Target group

School-aged twins were selected as the target group for this plan. The reasons mentioned by researchers for choosing this age group included the following:
1-
Prevention and promotion programs are more crucial for children and adolescents due to the psychosomatic challenges of high growth rate and puberty.
 
2-
Most twins at this age live in a similar environment in the same family, which allows examination of genetics and micro environmental factors such as the effect of different friends, food habits, and social interests.
 
3-
Twins' recruitment and follow-up are more easily performed through their schools and their parents in school-aged twins.
 
The study will exclude participants if they would not available for long-term follow-up. Twin pairs younger than six years or older than 18 years old and those who are unable to provide consent were excluded too. Twins who one of them is not available or one of them was dead will also be excluded.

Determining our program characteristics and national database datasets

Since a comprehensive program is needed to set up a population-based study, focus group discussions were used to identify the target group, determine the required minimum datasets for the development of the national twin database, specify questionnaires, and data recording process. Following the establishment steering committee, the data items and enrollment process were identified through focus group (FG) discussions with experts. FG discussions are the best solution to gather in-depth information about experts' thoughts and opinions on a topic.
Experts were selected through a purposive sampling technique for focus group discussions. All of the experts who have experience in twin studies were invited to participate in these meetings. To schedule sessions, a Ph.D. candidate, (MG) who has expertise in conducting qualitative studies contacted all of the experts by telephone conversation to invite them. She conducted all sessions and she explained the main objective of the sessions was explained to all participants at the beginning of the first session. Then, they discussed about required data elements that should be gathered through this survey.
Eight sessions were held over six months in the Thoracic Research Center, Imam Khomeini Hospital complex. A suggested list of data elements was formed through 90 min of focus group discussions [17]. In these meetings, important points were taken notes by the conductor. Thematic analysis as a qualitative analysis technique was employed to analyze the focus group discussion outcomes. Qualitative analysis was conducted to determine the main domains and sub-domains of data elements. First, transcripted gathered data was checked by other researchers. Subsequently, initial codes were assigned manually to transcripted data according to their interpretations by one researcher. All the coded data are coded based on the degree of similarity to create the final coding list. The main themes were extracted from the code lists and validated by all experts.
All of the data elements were classified into main themes and sub-themes. Expert consensus was reached when ≥ 85% of experts either agreed or disagreed with data elements. The Consolidated criteria for reporting qualitative research (COREQ) checklist was used to report the results. The result of the focus group discussions including the enrollment process is described in the result section.

School-aged twins’ enrollment and registration

In collaboration with the Ministry of Education of Iran, the complete list of school-aged twins, their city of residency, and their schools was retrieved from the national electronic educational system. Since the affiliation of researchers to Tehran University of Medical Sciences, we collaborated with Tehran Education Organization to recruit volunteered twin students who lived in Tehran city. At this phase of the project, the Ministry of Education did not provide us with contact information for the twins but provided us with the population of twins and their school names in different regions of Tehran. After holding educational sessions for school health experts, schools contacted twin families to inform them about our program. Data collection is ongoing and currently in its fifth year.
Since participation in this project was voluntary, complete information regarding the program was sent for parents to invite them with aid of the twins’ school. As part of the stage of contacting parents, the parents of the twins were offered to express their readiness and the paper-based consent form was passed to parents in-hand by schools to get their permission to enroll their children. After obtaining informed consent, the relevant paper-based questionnaire was filled out by the parents themselves. The process of the data collection method is described in Fig. 1.
A questionnaire included the twins’ and their parent's information, zygosity data, and informed consent for participating in our program filled out by the twins' mothers at home with aid of their twins. The first part of the questionnaire comprises twins' and their parents’ demographic data, urban area, national code, and contact information. The health staff of the Tehran Educational organization was available by phone to support parents with any questions regarding the aim of the study and how to fill out this questionnaire.

The platform for recording information and informing twins

As the Iranian school-aged twin registry was founded, the school-aged twin registry website (www.​persiantwin.​ir) was created to develop a platform for organizing and recording the twin’s information. An informational Website was also designed for this project. Some additional sections were assumed to inform the twins' families and how to participate in the twin's health follow-up program. Twins can connect with our registry and gain essential information using the website and/or directly by phone. They can make sure that the validity of our program. It was implemented in Persian to create better communication between our project and the twin family. Also, all the information collected by paper questionnaires was entered on the website through an electronic form.

Zygosity and the physical similarity questionnaires of twin pairs

Though the best method for zygosity determination can be obtained with DNA markers, it is so expensive and time-consuming in large population-based epidemiological studies. Thus, we used a standard questionnaire-based survey. Our questionnaire consists of two parts.
The first part consists of the three-item questionnaire known as the “Pea-in-Pods” questionnaire for twins’ mothers which has known as the most reliable questionnaire for zygosity determination with 95% accuracy [18]. The scores for each question were defined based on the study conducted by Ooki et al. [19]. The assigned scores for each question are described in the following. According to the first question, if the mother's answer to the first question is that the twins are like two halves of an apple, a score of one is assigned to this question. If the answer is that they are like two ordinary siblings, two points should be assigned to this question. A score of one to three was assigned to the second question based on the degree of difference and confusion between the twins. In the third question, based on who confuses the twins, a score of one to four was assigned [20].
Moreover, the second part of our questionnaire included the 11-items to investigate the physical similarity of twin pairs. The second part of the questionnaire was adapted from the 14-item questionnaire developed by Gao et al. [21]. It was customized for our research based on Iranian experts’ views. The questionnaire was reviewed in several focus group discussions. As a result, unnecessary items that were not applied to Iranian twins were removed based on the opinions of experts. Consequently, mothers were asked to respond to each question according to the provided options.
All of the questions were translated into Persians. The internal content validity of our questionnaire was confirmed by those experts who were familiar with our concept and participated in all focus group discussions. Reliability is related to the ability of an instrument to measure consistently. The internal consistency was assessed using Cronbach's alpha [22].
To validate the results of the zygosity questionnaire, we have a plan for the second phase. All parents that give us informed consent were invited for their child’s health evaluation in the twins’ health promotion clinic (#Project No: 98–3-252–46,014). In this project at the time of the twin's visit, one of the researcher’s team members will ask all questions from the mothers. Also, blood samples will be sent to the Genetic lab for zygosity determination in volunteered twins. The validity of the in-home filled questionnaire will be determined by comparison to the researcher-filled questionnaire in all twins visited at the health promotion clinic and the genetic results of volunteered twins.

Analysis

Statistical analysis was performed using SPSSv.20. Through descriptive analysis, frequencies and percentages were calculated for categorical variables and means and standard deviations for continuous variables. Bivariate correlation analysis was first used to check the zero-order correlations between all the variables. To analyze the similarity questionnaire results based on the Pea-in-pod zygosity score, logistic regression could be selected to model zygosity based on the variables in the similarity questionnaire because the target value (zygosity) is a binary variable. The correlation between these two questionnaires and finding out the screening criteria for zygosity is the subject of further study.

Results

Expert panel

The expert panel comprises 16 experts comprises whose demographic characteristics are listed in Table 1. The mean age of all participants was almost 43 ± 1.54, while sixty percent of participants were female. All of the invited experts attended all focus group meetings. All proposed data elements and viewpoints were transcripted by two researchers. The data saturation occurred when no new data elements were suggested, and the data elements were formed.
Table 1
Demographic characteristics of the expert panel
 
Data
Frequency
Percentage
Specialist
Internist
4
25.00%
Pediatricians
4
25.00%
Psychiatrist
3
18.75%
Community Medicine
1
6.25%
Epidemiologists
2
12.50%
Oral disease specialist
1
6.25%
Medical informatician
1
6.25%
Age
30–45
6
37.50%
45–60
5
31.25%
 > 60
4
25.00%
Experience
 < 5yrs
5
31.25%
5–10 yrs
3
18.75%
 > 10 yrs
6
37.50%

Database design and data collection method development

Based on summarizing the results of focus group discussions, two levels and eight sub-levels of data elements were determined to store the final data sets in our school-aged twin registry study. All of the potential datasets were categorized into two main themes, the first level of data including essential datasets, and the second level of data including medical history, general health, and clinical data. Data elements approved by more than 85% of experts were identified as the final data elements. In total, 52 data items were recognized as essential data sets. The details of the results of this step will be explained in another article. These two levels of data are described in the following in Table 2. The data collection protocol was also formed as a result of group discussions, which was explained in the form of the twin registration protocol in the method section.
Table 2
Details of data elements items
The first level of data (23 data items)
Demographic data of twin pairs (14 data items): First name and surname, Age, Birthdate, Type of twins (twin, triplet, quadruplet), Sex, Gender, City, Contact info, Date of data collection, Region of school, Education level, Height, Weight, BMI
Demographic data of parents (Seven data items): Mother’s Name, Father’s name, education level of parents, Occupation, Mother’s age in delivery time, mode of delivery, Smoking habits
Zygosity info (Two items): Zygosity information based on questionaries, Physical similarity questionaries score
The second level of data (29 data items)
Illness history in the family (One data item): History of chronic illness or disorder in the family
History of any disorder or illness in infancy (Six data elements): History of hospitalization in infancy, history of hospitalization in NICU, History of surgery in infancy, History of pulmonary disorders in infancy, History of nervous system disorder in infancy, Drug usage in infancy
History of specific or chronic diseases in the post-neonatal period (11 data elements): Appearance disorders, CNS disorders, Head & neck problems, pulmonary disease or disorder, Cardiology problems, Hematology disease, Urogenital disease, Gastrointestinal, Endocrine disease or disorder, Musculoskeletal disorders, Any type of skin disease, Other chronic diseases
Mental health status (Two data elements): History of behavioral or mental disorders, General Health Questionnaire (GHQ) result
General Health Status of twins (Eight data elements): Present medical history, Symptoms of present illness, History of hospitalization, History of surgery, Drugs, Special habits or addiction, Clinical examinations, Assessment
DNA or biological samples
The experts concluded that the first level of data should be collected in the preliminary phase with the cooperation of schools, and the second level of data, which is related to the general health of twins, should be collected in the second phase with the in-person visit of the experts. The plan for setting up health promotion clinics to improve the health of twins with the cooperation of clinicians affiliated with the Tehran University of Medical Sciences was also approved at this stage.

Estimation of the population of twin students across the country

We describe the frequency of twin populations throughout Iran in this section based on retrieved information from the Ministry of Education database. In total, the initial information of 189,738 students was retrieved from the database. All of them were twins who lived in 31 provinces of Iran. The number of school-aged twins based on each province is depicted on the map of Iran in Fig. 2.
The age range of all recovered twins is between seven and 19 years with a mean age of 13.46 (± 2.942) while 16% of the twins were 13 years old. All the twins were born between 2003 and 2017, of which 94,997 are boys (50.1%) and 94,741 are girls (49.9%). Of these, 90,522 were twins, 2,603 were triplets, and 353 were quadruplets or higher. Of 189,738 twin students, 2734 reported that they suffer from physical disabilities (1.4%). The distribution of school-aged twins is described in Figs. 2 and 3 in Iran. The majority of twins were at the elementary level (73.2%).

Preliminary results based on gathered data

The first phase of our program started in 2018 and data collection continued until 2022. Of 27,587 school-aged twins living in Tehran province, 17,208 individual twins live in Tehran city according to retrieved data from the Ministry of education. Of them, a total of 5,642 pairs of school-aged twins agreed to participate in this program and gave us informed consent to contact them. The response rate was almost 72%. All of them provide us with their demographic data. The frequency of twin pairs in different regions of Tehran is shown on the map Tehran in Fig. 4. The mean age of mothers was 44.231 ± 6.287.
According to the recorded information and the results of questionnaires, our sample size comprised 9772 twins, 906 triples, and 92 quadruplets. The frequency of twins according to the type of multiple twins in different areas of Tehran is also shown in Fig. 5.
Hence, the information of 10,770 individual twins has been enrolled in our registry. The mean age of twins is 14.38 ± 3.337. Of them, the majority of school-aged twins (63%) studied in elementary schools. Of 5,642 twin pairs who signed the informed consent, all of them fill-out the first part of the questionnaire regarding their demographic information but only 4988 (88.84% of all contacted twin pairs) twin mothers fill-out zygosity and physical similarity questionnaires completely, and accurately. The results showed that all of them were born between 2002 and 2013. The results showed that 42.6 percent of parents of recorded twins have academic educations, while only two parents were illiterate.

Findings from the questionnaires in the first phase

The content reliability of the Persian version of the Pea-in-Pods questionnaire has been confirmed by experts who participated in focus group discussions through this survey. The analysis of the filled questionnaire showed that it had adequate internal consistency in this study (Cronbach’s α = 0.923). Accordingly, the physical similarity questionnaire (11 items) had a Cronbach’s alpha of 0.936 and it reached a high value.
To calculate the zygosity score, only those who answered all three questions of the questionnaire remained. We determined the zygosity based on the overall score defined by Ooki. If the overall score is less than 6 or greater than 3, the twin was considered monozygotic (MZ). Accordingly, if the overall score is less than 10 or greater than 6, the twin was considered dizygotic (DZ) [23]. The results of zygosity determination according to the above formula and the first three questions are described in Table 3. Approximately one percent of the twins did not specify their twin types.
Table 3
Frequency of monozygotic and dizygotic based on Pea-in-Pods questionnaire
 
Twin Type
  
Quadruplet
Twins
Triplet
All participants
Total
MZ
Not Defined
0
5
0
5
703 (14%)
M-M
0
247
1
248
F-F
0
440
1
441
More than two pairs
0
0
9
9
DZ
Not Defined
0
21
1
22
4285 (86%)
M-M
0
1108
5
1113
F-M
0
1155
9
1164
F-F
0
1698
5
1703
More
22
0
261
283
M-M Male-Male, F-F Female-Female, M-F Male, Female
The second part of our questionnaire was determined to 11 items concerning physical similarity which was understood by mothers. All of the questions asked ranged from “no difference” to “completely different”. This part of the questionnaire is scored based on the difference with a score of one to three. According to the answers, we analyzed the 11 items concerning physical similarity based on cross-tabulation. According to the score devoted to each question in the physical similarity questionnaire, the overall score for each characteristic of twins is calculated. The results showed that all of the scores ranged from 11 to 33. In this questionnaire, the total scores are lower in identical twins than in non-identical twins.
The results of different degrees of similarity according to results in monozygotic and dizygotic twin pairs are described in Table 4. These responses were expressed by mothers. This part of the questionnaire is filled out based on the cognitive understanding that mothers have about their children.
Table 4
The percentage of physical similarity in MZ and DZ twins based on the mother’s perception
  
No response
No difference
Somewhat similar
Completely different
Facial appearance
MZ
10
293
387
13
DZ
21
161
1508
2595
Position of the hair whorl
MZ
2
464
211
26
DZ
20
677
1803
1785
Shape of eyebrow
MZ
4
489
188
22
DZ
26
519
1371
2369
Shape of eyes
MZ
5
393
279
26
DZ
26
379
1353
2527
Shape of ears
MZ
5
536
141
21
DZ
43
717
1581
1944
Voice
MZ
7
212
401
83
DZ
23
311
1422
2529
The number of moles or spots
MZ
13
129
339
222
DZ
87
186
898
3114
Shape of fingers
MZ
4
496
176
27
DZ
35
476
1093
2681
Sleeping face
MZ
6
487
182
28
DZ
40
493
1600
2152
Sleeping posture
MZ
2
438
222
41
DZ
35
575
1592
2083
The tendency of concordance for illness
MZ
7
342
290
64
DZ
40
647
2018
1580

Analysis

The comparison of the outcomes showed that there is a correlation between the total score obtained from the physical similarities with the zygosity score from the pea-in-pods questionnaire. The zygosity score and total score of similarity have a normal distribution. The zygosity score had a mild correlation with the total score of similarity (r = 0.579) using the pearson correlations coefficient. If we conduct a Spearman Correlation Coefficient on twins of the same sex, the zygosity score had a strong correlation with the total score of similarity (r = 0.696). All eleven variables of the similarity questionnaire showed a positive correlation with zygosity scores, and the associations with zygosity were statistically significant. Zero-order correlations between the variables are shown in Table A-2, Appendix A-1.
A logistic regression modeling was performed to model the zygosity based on the results of the similarity questionnaire. Logistic regression was successfully developed with 87.5% accuracy, 95.8% sensitivity, and 33.5% specificity. The results are shown in Table 5.
Table 5
Result of logistic regression
Factors
B
S.E
Wald
Sig
OR
95% C.I
Facial appearance
.542
.095
32.401
 < 0.001
1.719
1.427 to 2.072
Position of the hair whorl
.048
.090
.287
0.592
1.049
.880 to 1.250
Shape of eyebrow
.403
.095
17.797
 < 0.001
1.496
1.241 to 1.804
Shape of eyes
.307
.089
12.007
 < 0.05
1.360
1.143 to 1.618
Shape of ears
.284
.091
9.739
 < 0.05
1.329
1.111 to 1.588
Voice
-.137
.081
2.863
 < 0.05
.872
.744 to 1.022
The number of moles or spots
-.335
.073
20.971
 < 0.001
.715
.620 to 0.826
Shape of fingers
.596
.086
47.450
 < 0.001
1.815
1.532 to 2.150
Sleeping face
.477
.098
23.718
 < 0.001
1.612
1.330 to 1.953
Sleeping posture
.134
.090
2.217
0.137
1.143
.959 to 1.363
The tendency of concordance for illness
-.210
.077
7.319
 < 0.001
.811
.697 to 0.944
The results showed that all of the variables have a significant correlation with zygosity except sleeping posture and hair whorl. Since the accuracy doesn’t show the performance of the model alone, the ROC curve (receiver operating characteristic curve) was calculated for the developed model. The ROC curve for logistic regression was 89.31 (Fig. 6).

Discussion

In this project, the initial steps and progress of the Iranian school-aged twin registry are described. Our school-aged twin registry will be covered all of the monozygotic (MZ) and dizygotic (DZ) twin students with different educational degrees in collaboration with the Ministry of Education. Tehran as the most urban city in Iran with a population of 8,693,706 people was selected for the first phase of the study. Education in Iran is mandatory at primary school age. On other levels, students must be registered in the Iranian education system even if they study at home to obtain the educational certificate. Hence, we succeeded to get the complete list of student twins with the cooperation of the Ministry of Education. As a result, in collaboration with the Iranian ministry of health and the well-designed educational system, we succeeded to record more than 5,000 pairs of twins. This number seems significant compared to similar studies conducted in other countries [24, 25].
Evidence showed that twin registries failed without a continuous health follow-up program [9]. Therefore, in the first step, we defined the main aspects of our program and enrollment process to address this challenge. With predefined datasets, all of the information was recorded in a structured way to avoid problems with data redundancy and improper information recording [26]. Defining a uniform set of data could enhance data collection quality and it is so effective in data retrieval and analysis [27].
Due to the absence of genotyping information in the initial phase, we utilized the PPQ questionnaire as an indicator of zygosity in our study. Jarrar also believes that in the absence of access to biological samples, this questionnaire is the best indicator to determine the degree of homogeneity in twins [28]. Besides, in cooperation with the parents of the twins, we succeed to collect the results of zygosity recognition questionnaires in addition to recording demographic information. However, we will compare the results of this study to the results of analyzing the biological samples for zygosity determination.
The effectiveness of zygosity diagnosis by this questionnaire has been proven in twin registry-based research [18, 20, 21, 29, 30]. The conducted studies showed that such a questionnaire can be administered over the telephone and can be filled out by mothers of twins. According to the formula represented by Ooki [31], the zygosity of more than ninety percent of twins was correctly diagnosed. After that, this cutting point was employed by famous twin registries for zygosity determination such as the Australian twin registry [32], Serbian twin studies [33], TwinsUK registry [28], Chinese Adolescent Twin study [21, 34], Japanese twin registry [18], and Washington State twin registry [23].
The number of identical twins by the zygosity questionnaire is low compared to most previous twin studies. The results of our study are consistent with a previous multicenter study on multiple births conducted on the frequency of multiple twins in Tehran in which the rate of dizygotic twins in multiple births was high [35]. In addition to Iran, the high rate of DZ twinning has also been seen in Western Nigeria which was high compared to the European population [36]. Our study also showed that the average reproductive age of mothers of school-aged twins is almost 35.5 years. It has been supposed that increasing the reproductive age of women, ovulation with fertility drugs in women over 30 years old, and the emergence of ART techniques can be effective in increasing the birth of non-identical multiples [37]. Also, Zygosity questionnaires results should be verified in the next phase of the study by biobank samples,
Reliable and sustained participation was an imperative limitation in registry-based studies [38]. Getting involved participants in such studies is complicated in some circumstances. The analysis of similar twin registries revealed that developing registries only for epidemiological intention has not been successful [9]. The development of registry-based studies should contain a comprehensive follow-up program like longitudinal studies. Thus, developing a longitudinal twin health promotion program to assess the physical and mental health of school-aged twins is the future goal of our registry. Devising the school-aged twins' physical and mental health follow-up programs could be considered the new solution to address the potential challenges. Establishing a health promotion clinic in collaboration with clinicians interested in twin studies is one of the plans of this project. Establishing such a clinic for long-term monitoring of twins' health can provide the possibility of collecting information related to physical and mental health easily. Such programs can also make them interested in participating in this program due to individual benefits for twins.
Another limitation of our project was voluntary participation. Thus, the number of participants was limited to those who were willing to provide us with their children's information. The next limitation that we can mention was related to pea-in-pods questionnaire. To calculate the zygosity, all three questions of the pea-in-pods questionnaire had to be answered to determine zygosity. As a result, questionnaires that did not answer all three questions were excluded from the final analysis. Moreover, the validity of our results and our questionnaires will be determined in the next phase.

Conclusion

This paper described the initial achievements, methods, and initial results of a school-based twin registry. The experiences of our twin registry researchers showed that developing a twin registry with only population-based objectives is not successful. Recruiting school-aged twins through school health assistants leads to high enrollment and decreasing costs for the twin registry. The study showed a high rate of dizygotic twins that need to be verified by twin bio-sample in the next phase of studies.
Future articles are planned to describe the comprehensive conceptual model for developing health promotion clinics to assess the general physical and mental health of twins. Such studies not only enhance the general health of children but also leads to the creation of a large database of twin data for further research.

Acknowledgements

The authors would like to thank the Iranian Ministry of Education and the Tehran University of Medical Sciences for their collaboration with us.

Declarations

The research was approved by the Tehran University of Medical Sciences Ethics Committee (IR.TUMS.VCR.REC.1398.128). All methods were performed by the relevant guidelines and regulations. Informed consent was obtained from all subjects and/or their legal guardian(s).
Not applicable.

Competing interests

The authors declare no competing interests.
Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://​creativecommons.​org/​licenses/​by/​4.​0/​. The Creative Commons Public Domain Dedication waiver (http://​creativecommons.​org/​publicdomain/​zero/​1.​0/​) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Literatur
1.
Zurück zum Zitat Boomsma D, Busjahn A, Peltonen L. Classical twin studies and beyond. Nat Rev Genet. 2002;3(11):872–82.CrossRefPubMed Boomsma D, Busjahn A, Peltonen L. Classical twin studies and beyond. Nat Rev Genet. 2002;3(11):872–82.CrossRefPubMed
2.
Zurück zum Zitat Medda E, Toccaceli V, Fagnani C, Nisticò L, Brescianini S, Salemi M, Ferri M, D’Ippolito C, Alviti S, Arnofi A, et al. The Italian twin registry: an update at 18 years from its inception. Twin Res Hum Genet. 2019;22(6):572–8.CrossRefPubMed Medda E, Toccaceli V, Fagnani C, Nisticò L, Brescianini S, Salemi M, Ferri M, D’Ippolito C, Alviti S, Arnofi A, et al. The Italian twin registry: an update at 18 years from its inception. Twin Res Hum Genet. 2019;22(6):572–8.CrossRefPubMed
3.
Zurück zum Zitat Galton F. The history of twins, as a criterion of the relative powers of nature and nurture. Fraser’s Magazine. 1875;12(71):566–76. Galton F. The history of twins, as a criterion of the relative powers of nature and nurture. Fraser’s Magazine. 1875;12(71):566–76.
5.
Zurück zum Zitat Skytthe A, Kyvik K, Bathum L, Holm N, Vaupel JW, Christensen K. The Danish twin registry in the new millennium. Twin Res Hum Genet. 2006;9(6):763–71.CrossRefPubMed Skytthe A, Kyvik K, Bathum L, Holm N, Vaupel JW, Christensen K. The Danish twin registry in the new millennium. Twin Res Hum Genet. 2006;9(6):763–71.CrossRefPubMed
6.
Zurück zum Zitat Pedersen DA, Larsen LA, Nygaard M, Mengel-From J, McGue M, Dalgård C, Hvidberg L, Hjelmborg J, Skytthe A, Holm NV. The Danish twin registry: an updated overview. Twin Res Hum Genet. 2019;22(6):499–507.CrossRefPubMedPubMedCentral Pedersen DA, Larsen LA, Nygaard M, Mengel-From J, McGue M, Dalgård C, Hvidberg L, Hjelmborg J, Skytthe A, Holm NV. The Danish twin registry: an updated overview. Twin Res Hum Genet. 2019;22(6):499–507.CrossRefPubMedPubMedCentral
7.
Zurück zum Zitat Mathes T, Pieper D. Study design classification of registry-based studies in systematic reviews. J Clin Epidemiol. 2018;93:84.CrossRefPubMed Mathes T, Pieper D. Study design classification of registry-based studies in systematic reviews. J Clin Epidemiol. 2018;93:84.CrossRefPubMed
8.
Zurück zum Zitat Laugesen K, Ludvigsson JF, Schmidt M, Gissler M, Valdimarsdottir UA, Lunde A, Sørensen HT. Nordic health registry-based research: a review of health care systems and key registries. Clin Epidemiol. 2021;13:533.CrossRefPubMedPubMedCentral Laugesen K, Ludvigsson JF, Schmidt M, Gissler M, Valdimarsdottir UA, Lunde A, Sørensen HT. Nordic health registry-based research: a review of health care systems and key registries. Clin Epidemiol. 2021;13:533.CrossRefPubMedPubMedCentral
9.
Zurück zum Zitat Abtahi H, Gholamzadeh M, Shahmoradi L, Shariat M. An information-based framework for development national twin registry: Scoping review and focus group discussion. Int J Health Plan Manage. 2021. Abtahi H, Gholamzadeh M, Shahmoradi L, Shariat M. An information-based framework for development national twin registry: Scoping review and focus group discussion. Int J Health Plan Manage. 2021.
10.
Zurück zum Zitat Mulder DS, Spicer J. Registry-based medical research: data dredging or value building to quality of care? Ann Thorac Surg. 2019;108(1):274–82.CrossRefPubMed Mulder DS, Spicer J. Registry-based medical research: data dredging or value building to quality of care? Ann Thorac Surg. 2019;108(1):274–82.CrossRefPubMed
11.
Zurück zum Zitat van Dongen J, Gordon SD, McRae AF, Odintsova VV, Mbarek H, Breeze CE, Sugden K, Lundgren S, Castillo-Fernandez JE, Hannon E, et al. Identical twins carry a persistent epigenetic signature of early genome programming. Nat Commun. 2021;12(1):5618.CrossRefPubMedPubMedCentral van Dongen J, Gordon SD, McRae AF, Odintsova VV, Mbarek H, Breeze CE, Sugden K, Lundgren S, Castillo-Fernandez JE, Hannon E, et al. Identical twins carry a persistent epigenetic signature of early genome programming. Nat Commun. 2021;12(1):5618.CrossRefPubMedPubMedCentral
12.
Zurück zum Zitat Gharipour M, Haghjooy Javanmard S, Mansourian M, Sabri M, Khosravi E, Dianatkhah M, Sadeghian L, Jabarzare Z, Sarrafzadegan N. Isfahan Twins Registry (ITR): An Invaluable Platform for Epidemiological and Epigenetic Studies: Design and Methodology of ITR. Twin Res Hum Genet. 2019;22(6):579–82.CrossRefPubMed Gharipour M, Haghjooy Javanmard S, Mansourian M, Sabri M, Khosravi E, Dianatkhah M, Sadeghian L, Jabarzare Z, Sarrafzadegan N. Isfahan Twins Registry (ITR): An Invaluable Platform for Epidemiological and Epigenetic Studies: Design and Methodology of ITR. Twin Res Hum Genet. 2019;22(6):579–82.CrossRefPubMed
13.
Zurück zum Zitat Bahari Shargh R, Rostami S, Abtahi H, Shariat M, Mardaneh J, Noughi F, Hosein Lookzadeh M, Khorsandi B, Zendehdel K: The Iranian Newborn Multiples Registry (IRNMR): a registry protocol. J Matern Fetal Neonatal Med. 2021:1–4. Bahari Shargh R, Rostami S, Abtahi H, Shariat M, Mardaneh J, Noughi F, Hosein Lookzadeh M, Khorsandi B, Zendehdel K: The Iranian Newborn Multiples Registry (IRNMR): a registry protocol. J Matern Fetal Neonatal Med. 2021:1–4.
14.
Zurück zum Zitat Abtahi H, Gholamzadeh M, Shahmoradi L. The necessity of development and implementation of twins registry in Iran. J Health Biomed Inform. 2018;5(3):398–410. Abtahi H, Gholamzadeh M, Shahmoradi L. The necessity of development and implementation of twins registry in Iran. J Health Biomed Inform. 2018;5(3):398–410.
15.
Zurück zum Zitat Adamson D, Baker V. Multiple births from assisted reproductive technologies: a challenge that must be met. Fertil Steril. 2004;81(3):517–22.CrossRefPubMed Adamson D, Baker V. Multiple births from assisted reproductive technologies: a challenge that must be met. Fertil Steril. 2004;81(3):517–22.CrossRefPubMed
16.
Zurück zum Zitat Abedini M, Ghaheri A, Omani Samani R. Assisted reproductive technology in Iran: the first national report on centers, 2011. Int J Fertil Steril. 2016;10(3):283–9.PubMedPubMedCentral Abedini M, Ghaheri A, Omani Samani R. Assisted reproductive technology in Iran: the first national report on centers, 2011. Int J Fertil Steril. 2016;10(3):283–9.PubMedPubMedCentral
17.
Zurück zum Zitat Choquet R, Maaroufi M, de Carrara A, Messiaen C, Luigi E, Landais P. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research. J Am Med Inform Assoc. 2015;22(1):76–85.CrossRefPubMed Choquet R, Maaroufi M, de Carrara A, Messiaen C, Luigi E, Landais P. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research. J Am Med Inform Assoc. 2015;22(1):76–85.CrossRefPubMed
18.
Zurück zum Zitat Ooki S, Asaka A. Zygosity diagnosis in young twins by questionnaire for twins’ mothers and twins’ self-reports. Twin Res Hum Genet. 2004;7(1):5–12.CrossRef Ooki S, Asaka A. Zygosity diagnosis in young twins by questionnaire for twins’ mothers and twins’ self-reports. Twin Res Hum Genet. 2004;7(1):5–12.CrossRef
19.
Zurück zum Zitat Ooki S, Yamada K, Asaka A. Zygosity diagnosis of twins by questionnaire for twins’ mothers. Acta Genet Med Gemellol. 1993;42:17–17.CrossRefPubMed Ooki S, Yamada K, Asaka A. Zygosity diagnosis of twins by questionnaire for twins’ mothers. Acta Genet Med Gemellol. 1993;42:17–17.CrossRefPubMed
20.
Zurück zum Zitat Lenau F, Hahn E, Peters A-L, Gottschling J, Thiel W, Spinath FM. Zygosity determination in twin studies: a validation of zygosity questionnaires using DNA in the German TwinLife Study. 2017. Lenau F, Hahn E, Peters A-L, Gottschling J, Thiel W, Spinath FM. Zygosity determination in twin studies: a validation of zygosity questionnaires using DNA in the German TwinLife Study. 2017.
21.
Zurück zum Zitat Gao W, Li L, Cao W, Zhan S, Lv J, Qin Y, Pang Z, Wang S, Chen W, Chen R. Determination of zygosity by questionnaire and physical features comparison in Chinese adult twins. Twin Res Hum Genet. 2006;9(2):266–71.CrossRefPubMed Gao W, Li L, Cao W, Zhan S, Lv J, Qin Y, Pang Z, Wang S, Chen W, Chen R. Determination of zygosity by questionnaire and physical features comparison in Chinese adult twins. Twin Res Hum Genet. 2006;9(2):266–71.CrossRefPubMed
23.
Zurück zum Zitat Avery AR, Turkheimer E, Tsang S, Duncan GE. Psychometric and classification properties of the peas in a pod questionnaire. Twin Res Hum Genet. 2020;23(4):247–55.CrossRefPubMed Avery AR, Turkheimer E, Tsang S, Duncan GE. Psychometric and classification properties of the peas in a pod questionnaire. Twin Res Hum Genet. 2020;23(4):247–55.CrossRefPubMed
24.
Zurück zum Zitat Ivanovic DM, Llop ER, Alvear JA, Pérez HT, Díaz NS, Leyton BD, Almagià AF, Larraín CG, Alvarez JE, Herrera YF. Chilean school-age children twin registry: planning, sampling and implications. Twin Res Hum Genet. 2006;9(6):743–6.CrossRefPubMed Ivanovic DM, Llop ER, Alvear JA, Pérez HT, Díaz NS, Leyton BD, Almagià AF, Larraín CG, Alvarez JE, Herrera YF. Chilean school-age children twin registry: planning, sampling and implications. Twin Res Hum Genet. 2006;9(6):743–6.CrossRefPubMed
25.
Zurück zum Zitat Kovas Y, Galajinsky EV, Boivin M, Harold GT, Jones A, Lemelin J-P, Luo Y, Petrill SA, Plomin R, Tikhomirova T. The Russian school twin registry (RSTR): Project progress. Twin Res Hum Genet. 2013;16(1):126–33.CrossRefPubMed Kovas Y, Galajinsky EV, Boivin M, Harold GT, Jones A, Lemelin J-P, Luo Y, Petrill SA, Plomin R, Tikhomirova T. The Russian school twin registry (RSTR): Project progress. Twin Res Hum Genet. 2013;16(1):126–33.CrossRefPubMed
26.
Zurück zum Zitat Lee K, Weiskopf N, Pathak J. A framework for data quality assessment in clinical research datasets. AMIA Annu Symp Proc. 2017;2017:1080–9.PubMed Lee K, Weiskopf N, Pathak J. A framework for data quality assessment in clinical research datasets. AMIA Annu Symp Proc. 2017;2017:1080–9.PubMed
27.
Zurück zum Zitat Svensson-Ranallo PA, Adam TJ, Sainfort F. A framework and standardized methodology for developing minimum clinical datasets. AMIA Jt Summits Transl Sci Proc. 2011;2011:54–8.PubMedPubMedCentral Svensson-Ranallo PA, Adam TJ, Sainfort F. A framework and standardized methodology for developing minimum clinical datasets. AMIA Jt Summits Transl Sci Proc. 2011;2011:54–8.PubMedPubMedCentral
28.
Zurück zum Zitat Jarrar ZA, Ward KJ, Mangino M, Cherkas LF, Gill R, Gillham-Nasenya I, Yarand D, Hart D, Hammond CJ, Spector TD. Definitive zygosity scores in the peas in the pod questionnaire is a sensitive and accurate assessment of the Zygosity of adult twins. Twin Res Hum Genet. 2018;21(2):146–54.CrossRefPubMed Jarrar ZA, Ward KJ, Mangino M, Cherkas LF, Gill R, Gillham-Nasenya I, Yarand D, Hart D, Hammond CJ, Spector TD. Definitive zygosity scores in the peas in the pod questionnaire is a sensitive and accurate assessment of the Zygosity of adult twins. Twin Res Hum Genet. 2018;21(2):146–54.CrossRefPubMed
29.
Zurück zum Zitat Rietveld MJ, van Der Valk JC, Bongers IL, Stroet TM, Slagboom PE, Boomsma DI. Zygosity diagnosis in young twins by parental report. Twin Res. 2000;3(3):134–41.CrossRefPubMed Rietveld MJ, van Der Valk JC, Bongers IL, Stroet TM, Slagboom PE, Boomsma DI. Zygosity diagnosis in young twins by parental report. Twin Res. 2000;3(3):134–41.CrossRefPubMed
30.
Zurück zum Zitat Jackson RW, Snieder H, Davis H, Treiber FA. Determination of twin zygosity: a comparison of DNA with various questionnaire indices. Twin Res Hum Genet. 2001;4(1):12–8.CrossRef Jackson RW, Snieder H, Davis H, Treiber FA. Determination of twin zygosity: a comparison of DNA with various questionnaire indices. Twin Res Hum Genet. 2001;4(1):12–8.CrossRef
31.
Zurück zum Zitat Ooki S, Yamada K, Asaka A. Zygosity diagnosis of twins by questionnaire for twins’ mothers. Acta Genet Med Gemellol (Roma). 1993;42(1):17–22.CrossRefPubMed Ooki S, Yamada K, Asaka A. Zygosity diagnosis of twins by questionnaire for twins’ mothers. Acta Genet Med Gemellol (Roma). 1993;42(1):17–22.CrossRefPubMed
32.
Zurück zum Zitat Murphy K, Lam J, Cutler T, Tyler J, Calais-Ferreira L, Li S, Little C, Ferreira P, Craig JM, Scurrah KJ, et al. Twins research Australia: a new paradigm for driving twin research. Twin Res Hum Genet. 2019;22(6):438–45.CrossRefPubMed Murphy K, Lam J, Cutler T, Tyler J, Calais-Ferreira L, Li S, Little C, Ferreira P, Craig JM, Scurrah KJ, et al. Twins research Australia: a new paradigm for driving twin research. Twin Res Hum Genet. 2019;22(6):438–45.CrossRefPubMed
33.
Zurück zum Zitat Čolović P, Branovački B, ZgonjaninBosić D. Validation of Zygosity assessment by a self-report questionnaire in a sample of adult Serbian twins. Primenjena psihologija. 2019;11(4):419–32.CrossRef Čolović P, Branovački B, ZgonjaninBosić D. Validation of Zygosity assessment by a self-report questionnaire in a sample of adult Serbian twins. Primenjena psihologija. 2019;11(4):419–32.CrossRef
34.
Zurück zum Zitat Gao W, Cao W, Lv J, Yu C, Wu T, Wang S, Meng L, Wang D, Wang Z, Pang Z, et al. The Chinese national twin registry: a ‘gold mine’ for scientific research. J Intern Med. 2019;286(3):299–308.CrossRefPubMed Gao W, Cao W, Lv J, Yu C, Wu T, Wang S, Meng L, Wang D, Wang Z, Pang Z, et al. The Chinese national twin registry: a ‘gold mine’ for scientific research. J Intern Med. 2019;286(3):299–308.CrossRefPubMed
35.
Zurück zum Zitat Omani Samani R, Almasi-Hashiani A, Vesali S, Shokri F, Cheraghi R, Torkestani F, Sepidarkish M. Tehran survey of potential risk factors for multiple births. Int J Fertil Steril. 2017;11(3):220–5.PubMedPubMedCentral Omani Samani R, Almasi-Hashiani A, Vesali S, Shokri F, Cheraghi R, Torkestani F, Sepidarkish M. Tehran survey of potential risk factors for multiple births. Int J Fertil Steril. 2017;11(3):220–5.PubMedPubMedCentral
36.
Zurück zum Zitat Omonkhua AA, Okonofua FE, Ntoimo LFC, Aruomaren AI, Adebayo AM, Nwuba R. Community perceptions on causes of high dizygotic twinning rate in Igbo-Ora, South-west Nigeria: a qualitative study. PLoS One. 2020;15(12):e0243169.CrossRefPubMedPubMedCentral Omonkhua AA, Okonofua FE, Ntoimo LFC, Aruomaren AI, Adebayo AM, Nwuba R. Community perceptions on causes of high dizygotic twinning rate in Igbo-Ora, South-west Nigeria: a qualitative study. PLoS One. 2020;15(12):e0243169.CrossRefPubMedPubMedCentral
37.
Zurück zum Zitat Hoekstra C, Zhao ZZ, Lambalk CB, Willemsen G, Martin NG, Boomsma DI, Montgomery GW. Dizygotic twinning. Hum Reprod Update. 2007;14(1):37–47.CrossRefPubMed Hoekstra C, Zhao ZZ, Lambalk CB, Willemsen G, Martin NG, Boomsma DI, Montgomery GW. Dizygotic twinning. Hum Reprod Update. 2007;14(1):37–47.CrossRefPubMed
38.
Zurück zum Zitat Nobile H, Bergmann MM, Moldenhauer J, Borry P. Participants’ accounts on their decision to join a cohort study with an attached biobank: a qualitative content analysis study within two German studies. J Empir Res Hum Res Ethics. 2016;11(3):237–49.CrossRefPubMed Nobile H, Bergmann MM, Moldenhauer J, Borry P. Participants’ accounts on their decision to join a cohort study with an attached biobank: a qualitative content analysis study within two German studies. J Empir Res Hum Res Ethics. 2016;11(3):237–49.CrossRefPubMed
Metadaten
Titel
Iranian school-aged twin registry: preliminary reports and project progress
verfasst von
Hamidreza Abtahi
Marsa Gholamzadeh
Roza Baharii
Publikationsdatum
01.12.2023
Verlag
BioMed Central
Erschienen in
BMC Pediatrics / Ausgabe 1/2023
Elektronische ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-023-03865-x

Weitere Artikel der Ausgabe 1/2023

BMC Pediatrics 1/2023 Zur Ausgabe

ADHS-Medikation erhöht das kardiovaskuläre Risiko

16.05.2024 Herzinsuffizienz Nachrichten

Erwachsene, die Medikamente gegen das Aufmerksamkeitsdefizit-Hyperaktivitätssyndrom einnehmen, laufen offenbar erhöhte Gefahr, an Herzschwäche zu erkranken oder einen Schlaganfall zu erleiden. Es scheint eine Dosis-Wirkungs-Beziehung zu bestehen.

Erstmanifestation eines Diabetes-Typ-1 bei Kindern: Ein Notfall!

16.05.2024 DDG-Jahrestagung 2024 Kongressbericht

Manifestiert sich ein Typ-1-Diabetes bei Kindern, ist das ein Notfall – ebenso wie eine diabetische Ketoazidose. Die Grundsäulen der Therapie bestehen aus Rehydratation, Insulin und Kaliumgabe. Insulin ist das Medikament der Wahl zur Behandlung der Ketoazidose.

Frühe Hypertonie erhöht späteres kardiovaskuläres Risiko

Wie wichtig es ist, pädiatrische Patienten auf Bluthochdruck zu screenen, zeigt eine kanadische Studie: Hypertone Druckwerte in Kindheit und Jugend steigern das Risiko für spätere kardiovaskuläre Komplikationen.

Betalaktam-Allergie: praxisnahes Vorgehen beim Delabeling

16.05.2024 Pädiatrische Allergologie Nachrichten

Die große Mehrheit der vermeintlichen Penicillinallergien sind keine. Da das „Etikett“ Betalaktam-Allergie oft schon in der Kindheit erworben wird, kann ein frühzeitiges Delabeling lebenslange Vorteile bringen. Ein Team von Pädiaterinnen und Pädiatern aus Kanada stellt vor, wie sie dabei vorgehen.

Update Pädiatrie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.