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Thalidomide Embryopathy Swedish Study: 1987 - 2009

SND-ID: SND 1256

Overview
Data and documentation

Creator/Principal investigator(s)

Lotta Sjögreen - University of Gothenburg, Institute of Neuroscience and Physiology

Kerstin Strömland - University of Gothenburg, Institute of Neuroscience and Physiology

Description

Since the end of the 1980s a number of studies have been performed at the University of Gothenburg of individuals born in Sweden with birth defects caused by Neurosedyn (Thalidomide Embryopathy - TE). Two pediatric ophthalmologists Kerstin Strömland at the University of Gothenburg, Sweden and Marilyn Miller at the University of Illinois in Chicago USA, performed the initial studies while other researchers have been involved in later studies. We collected data from medical records from their childhood and performed scrutinized examinations of the affected individuals with documentation through photos and videos. These studies of a considerable number of individuals with TE have been recognized as probably being the only of its kind in the world and international researchers have suggested that the data ought to be archived for future studies in teratology.

The first step in this procedure was the Thalidomide Archives Project (TAP) made by Teratology Society (later renamed Society for Birth Defects Research and Prevention). By permission of 16 patients suffering from TE, study data from medical records, examination protocols, photos and videos as well as a Webinar have been archived and made available for members of Teratology Society. It is not permitted or possible to copy any documentation.

The present archived material includes digitized data from two studies of the Swedish population of TE (Neurosedyn).

Study 1 was performed 1987-1989 and consisted of 86 Swedish individuals born with TE and it had a focus on ophthalmology.

Study 2 was performed 2007-2009 by a multidisciplinary team of experts in ophthalmology, speech pathology, orthopedics, dentistry and neuropsychiatry. Thirty-one individuals with TE were examined of whom 25 who had participated in Study 1 are included in this documentation. The data originate from the ophthalmological examinations.

Physical data in the study are archived at the University of Gothenburg, archive number 180:1, Institute of Neuroscience and Physiology, series F4A. Show less..

Language

English

Swedish

Research principal, contributors, and funding

Research principal

University of Gothenburg

Responsible department/unit

Institute of Neuroscience and Physiology

Protection and ethical review

Data contains personal data

Yes

Sensitive personal data

Yes

Type of personal data

Survey data, photographs, videos, medical assessments, medical records.

Code key exists

Yes

Ethics Review

Gothenburg - Ref. Ö 556_03

Method and time period

Unit of analysis

Individual/Patient

Population

Individuals with thalidomide embryopathy (n=86) born in Sweden

Study design

Observational study

Sampling procedure

Total universe/Complete enumeration

Time period(s) investigated

1987-01-01 – 2009-12-31

Geographic coverage

Geographic spread

Geographic location: Sweden

Lowest geographic unit

Country

Highest geographic unit

Country

Topic and keywords

Research area

Medical and Health Sciences (The Swedish standard of fields of research 2011)

Keywords

ophthalmology, thalidomide, prenatal injuries, neurosedyn

Publications

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Strömland K, Nordin V, Miller M, Akerström B, Gillberg C. Autism in thalidomide embryopathy: a population study. Dev Med Child Neurol. 1994 Apr;36(4):351-6.
DOI: https://doi.org/10.1111/j.1469-8749.1994.tb11856.x

Ghassemi Jahani SA, Danielsson A, Ab-Fawaz, Hebelka H, Danielson B, Brisby H. Degenerative Changes in the Cervical Spine Are More Common in Middle-Aged Individuals with Thalidomide Embryopathy than in Healthy Controls. PLoS One. 2016 May 13;11(5):e0155493. doi: 10.1371/journal.pone.0155493. eCollection 2016.
DOI: https://doi.org/10.1371/journal.pone.0155493

Ghassemi Jahani SA, Karlsson J, Brisby H, Danielsson AJ. Health-related quality of life and function in middle-aged individuals with thalidomide embryopathy. J Child Orthop. 2016 Dec;10(6):691-703. Epub 2016 Nov 16.
DOI: https://doi.org/10.1007/s11832-016-0797-6

Strömland K, Philipson E, Andersson Grönlund M. Offspring of male and female parents with thalidomide embryopathy: birth defects and functional anomalies. Teratology. 2002 Sep;66(3):115-21.
DOI: https://doi.org/10.1002/tera.10083

Miller MT. Thalidomide embryopathy: a model for the study of congenital incomitant horizontal strabismus. Trans Am Ophthalmol Soc. 1991;89:623-74. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1298636/

Strömland K, Miller MT. Thalidomide embryopathy: revisited 27 years later. Acta Ophthalmol (Copenh). 1993 Apr;71(2):238-45.
DOI: https://doi.org/10.1111/j.1755-3768.1993.tb04997.x

Ghassemi Jahani SA, Danielson B, Karlsson J, Danielsson AJ. Long-term follow-up of thalidomide embryopathy: malformations and development of osteoarthritis in the lower extremities and evaluation of upper extremity function. J Child Orthop. 2014 Oct;8(5):423-33. doi: 10.1007/s11832-014-0609-9. Epub 2014 Oct 10.
DOI: https://doi.org/10.1007/s11832-014-0609-9

Strömland K. Ögonmuskelförlamning kan ge kunskap om autism. Läkartidningen. 2000 Nov 8;97(45):5112-3. https://lakartidningen.se/wp-content/uploads/OldPdfFiles/2000/21950.pdf

Sjögreen L, Kiliaridis S. Facial palsy in individuals with thalidomide embryopathy: frequency and characteristics. J Laryngol Otol. 2012 Sep;126(9):902-6.
DOI: https://doi.org/10.1017/S0022215112001429.

Miller MT, Strömland K, Ventura L. Congenital aberrant tearing: a re-look. Trans Am Ophthalmol Soc. 2008;106:100-15; discussion 115-6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646435/

Strömland K, Miller MT. Refractive evaluation in thalidomide embryopathy. Graefes Arch Clin Exp Ophthalmol. 1992;230(2):140-9.
DOI: https://doi.org/10.1007/BF00164652

Miller MT, Strömland K, Ventura L, Johansson M, Bandim JM, Gillberg C. Autism associated with conditions characterized by developmental errors in early embryogenesis: a mini review. Int J Dev Neurosci. 2005 Apr-May;23(2-3):201-19.
DOI: https://doi.org/10.1016/j.ijdevneu.2004.06.007

Ekfeldt A, Carlsson GE. Dental status and oral function in an adult group of subjects with thalidomide embryopathy - a clinical and questionnaire study. Acta Odontol Scand. 2008 Oct;66(5):300-6.
DOI: https://doi.org/10.1080/00016350802307638

Miller MT, Strömland K. The study of malformations "by the company they keep". Trans Am Ophthalmol Soc. 1992;90:247-60; discussion 260-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1298437/

Miller MT, Strömland K. Ocular motility in thalidomide embryopathy. J Pediatr Ophthalmol Strabismus. 1991 Jan-Feb;28(1):47-54.

Ghassemi Jahani SA, Danielsson A, Karlsson J, Brisby H. Middle-aged individuals with thalidomide embryopathy have undergone few surgical limb procedures and demonstrate a high degree of physical independence. PLoS One. 2017 Oct 20;12(10):e0186388. eCollection 2017.
DOI: https://doi.org/10.1371/journal.pone.0186388

Miller MT. Ocular teratology. Observations, speculations, questions, principles reaffirmed. Eye (Lond). 1992;6 (Pt 2):177-80.
DOI: https://doi.org/10.1016/0039-6257(91)90107-q

Miller MT, Strömland K, Ventura L, Johansson M, Bandim JM, Gillberg C. Autism with ophthalmologic malformations: the plot thickens. Trans Am Ophthalmol Soc. 2004;102:107-20; discussion 120-1.
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Dataset

Thalidomide Embyopathy Swedish Study: 1987 - 2009

Associated documentation

List_of_examinations_and_examination_history_SND_1256.txt

File_tree_SND_1256.txt

TE_Questionnaire_Studie2_SND_1256.pdf

Description

Contents and structure

1. Code list (21-05-21_Code list.xlsx)
Pseudonymized information on case number, sex, information about available documents and about participation in Thalidomide Archives Project (TAP) (in English).

2. Study 1 - Overview of archived material (2021-05-21_TE_Overview.xlsx)
Data on 86 individuals with TE : case number, year of birth, sex, malformation of ears, hearing, facial palsy, Duane syndrome, gaze paresis, tearing when eating and emotionally, primary position of eyes

Version 1

2021-10-26
https://doi.org/10.5878/k196-rj66

Citation

Lotta Sjögreen, Kerstin Strömland. University of Gothenburg (2021). Thalidomide Embyopathy Swedish Study: 1987 - 2009. Swedish National Data Service. Version 1. https://doi.org/10.5878/k196-rj66

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Data format / data structure

Numeric

Text

Still image

Video

Creator/Principal investigator(s)

Lotta Sjögreen - University of Gothenburg, Institute of Neuroscience and Physiology

Kerstin Strömland - University of Gothenburg, Institute of Neuroscience and Physiology

Time period(s) investigated

1987-01-01 – 2009-12-31

Data collection 1

Mode of collection: Observation
Time period(s) for data collection: 1987–1989
Source of the data: Registers/Records/Accounts: Medical/Clinical, Research data: Published, Research data: Unpublished, Population group, Geographic area

Data collection 2

Mode of collection: Observation
Time period(s) for data collection: 2007–2009
Source of the data: Registers/Records/Accounts: Medical/Clinical, Registers/Records/Accounts: Academic/Aptitude, Events/Interactions, Research data: Published, Population group, Geographic area

Number of individuals/objects

Published: 2021-10-26

Last updated: 2021-10-26

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