Thalidomide Embryopathy Swedish Study 1987 - 2009
SND-ID: snd1256-1. Version: 1. DOI: https://doi.org/10.5878/k196-rj66
Citation
Creator/Principal investigator(s)
Lotta Sjögreen - University of Gothenburg, Institute of Neuroscience and Physiology
Kerstin Strömland - University of Gothenburg, Institute of Neuroscience and Physiology
Research principal
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
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suffering from TE, study data from medical records, examination protocols, photos and videos as well as a Webinar have been archived and made available for members of Teratology Society.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.
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, visual acuity, other eye findings, malformation of thumbs, upper and lower extremities and vertebrae, malformation of heart, lungs, kidneys, anal atresia, other malformations, intellectual disability, autism, combination of defects and number of tablets taken by mother (in English).
3. Study 1 - Anamnestic data (2021-05_21_Study 1_TE History.xlsx)
Data on the mother's pregnancy, intake of Neurosedyn tablets, heredity, early development, schooling, occupation/social, and data on tearing function (in English).
4. Study 1 - Results of eye examination (2021-05-21_Study 1_TE Physical examination.xlsx)
Mostly unpublished data (in English).
5. Study 1 - Results of eye examination (Scanned examination protocols, 123 files, 85 individuals)
Complete data (in English).
6. Study 2 - Results of eye examination (Scanned eye examination protocols, 23 files, 23 individuals)
(in English).
7. Study 2 – Questionnaire answered by participants (Scanned documents, 20 files, 20 individuals)
(in Swedish).
8. Copies of medical records (scanned documents, 82 files, 82 individuals)
Medical reports and certificates from guardians that formed the basis of the decisions for the Board of the Thalidomide Association (Neurosedynskadenämnden) (Swedish text).
9. Study 1 and 2 - Cropped photos (PDF files, 84 files, 84 individuals)
Photos of face, eyes, eye movements, ocular fundus, ears and malformed extremities. The photos are cropped to shelter the identity of the individuals.
10a. Study 1 and 2 - Digitized original photos (jpg-files, individuals 1-86, varying number of files per individual)
Photos of face, eyes, eye movements, ocular fundus, ears and malformed extremities. Photos from Study 1 were scanned from diapositive slides.
10b. Studie 1 - Video recordings (.wmv files and one .mpg file, 21 individuals)
Interviews and documentation of common situations. Show less..
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
Unit of analysis
Population
Individuals with thalidomide embryopathy (n=86) born in Sweden
Study design
Observational study
Sampling procedure
Time period(s) investigated
1987-01-01 – 2009-12-31
Number of individuals/objects
86
Data format / data structure
Geographic spread
Geographic location: Sweden
Lowest geographic unit
Country
Highest geographic unit
Country
Responsible department/unit
Institute of Neuroscience and Physiology
Ethics Review
Gothenburg - Ref. Ö 556_03
Research area
Medical and health sciences (Standard för svensk indelning av forskningsämnen 2011)
Keywords
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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