Achondroplasia
Achondroplasia Adolescent Experience Measure (AAEM)
Copyright: Mery Brod, The Brod Group
Disease / Condition: achondroplasia
Population, Age: adolescent, 11 to <18 years of age
Type of Clinical Outcome Assessment: PRO measure to assess the impact of having achondroplasia on the adolescent.
Outcome assessed: health-related quality of life
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Domains (n=5): Physical Health, Functioning, Emotional Well-being, Social Well-being, and School
Number of items: 27 scored items
Recall: past two weeks
Language of Development: English for USA -
Pfeiffer KM, Brod M, Smith A, Viuff D, Ota S, Charlton RW. Functioning and well-being in older children and adolescents with achondroplasia: A qualitative study. Am J Med Genet A. 2022;188(2):454-62. doi:10.1002/ajmg.a.62534.
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For more information on this measure, for use and/or licensing, contact Dr. Brod at (+1) 415 381 5532 or at mbrod@thebrodgroup.net or by filling out the CONTACT FORM.
Achondroplasia Child Experience Measure – Impact (ACEM-Impact)
Copyright: Mery Brod, The Brod Group
Disease / Condition: achondroplasia
Population, Age: adult; parent/guardian of child with achondroplasia, 2 to <12 years of age
Type of Clinical Outcome Assessment: ObsRO measure to assess the impact of having achondroplasia on the child.
Outcome assessed: health-related quality of life
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Domains (n=6): Daily Living Functioning, Physical Functioning, School Functioning, Social Functioning, Social Well-being, and Emotional Well-being
Number of items: 25 items
Recall: past two weeks
Language of Development: English for USA -
1. Pfeiffer KM, Brod M, Smith A, Gianettoni J, Viuff D, Ota S et al. Assessing physical symptoms, daily functioning, and well-being in children with achondroplasia. Am J Med Genet A. 2021;185(1):33-45. doi:10.1002/ajmg.a.61903.
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Danish-Denmark
English-Australia
English-Canada
English-Ireland
English-New Zealand
English-United Kingdom
French-Canada
French-France
French-Switzerland
German-Germany
Italian-Italy
Japan-Japanese
Norwegian-Norway
Polish-Poland
Portuguese-Portugal
Spanish-Spain
Spanish-Mexico
Spanish-US
Swedish-Sweden
For more information on this measure, for use and/or licensing, contact Dr. Brod at (+1) 415 381 5532 or at mbrod@thebrodgroup.net or by filling out the CONTACT FORM.
Achondroplasia Child Experience Measure – Observable Signs Measure (ACEM-OSM)
Copyright: Mery Brod, The Brod Group
Disease / Condition: achondroplasia
Population, Age: adult; parent/guardian of child with achondroplasia, 2 to <12 years of age
Type of Clinical Outcome Assessment: ObsRO measure to assess the observable signs of achondroplasia.
Outcome assessed: physical signs of achondroplasia
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Domains (n=1): Physical Signs of achondroplasia
Number of items: 8 items
Recall: past two weeks
Language of Development: English for USA -
1. Pfeiffer KM, Brod M, Smith A, Gianettoni J, Viuff D, Ota S et al. Assessing physical symptoms, daily functioning, and well-being in children with achondroplasia. Am J Med Genet A. 2021;185(1):33-45. doi:10.1002/ajmg.a.61903.
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Danish-Denmark
English-Australia
English-Canada
English-Ireland
English-New Zealand
English-UK
French-Canada
German-Austria
German-Germany
Japanese-Japan
Norwegian-Norway
Portuguese-Portugal
Spanish-Spain
Spanish-US
Swedish-Sweden
For more information on this measure, for use and/or licensing, contact Dr. Brod at (+1) 415 381 5532 or at mbrod@thebrodgroup.net or by filling out the CONTACT FORM.
Achondroplasia Parent Experience Measure (APEM)
Copyright: Mery Brod, The Brod Group
Disease / Condition: achondroplasia
Population, Age: adult: parent/guardian of child with achondroplasia aged 2 to <12 years
Type of Clinical Outcome Assessment: PRO measure to assess the impact of having a child with achondroplasia on parent.
Outcome assessed: health-related quality of life
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Domains (n=2): Emotional Well-being and Caretaking Responsibilities
Number of items: 12
Recall: past two weeks
Language of Development: English for USA -
Pfeiffer KM, Brod M, Smith A, Gianettoni J, Viuff D, Ota S et al. Assessing the impacts of having a child with achondroplasia on parent well-being. Qual Life Res. 2021;30(1):203-15. doi:10.1007/s11136-020-02594-3.
Pfeiffer KM, Brod M, Smith A, Gianettoni J, Viuff D, Ota S et al. Correction to: Assessing the impacts of having a child with achondroplasia on parent well-being. Qual Life Res. 2021;30(1):217-9. doi:10.1007/s11136-020-02659-3.
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Danish-Denmark
English-Australia
English-Canada
English-Ireland
English-New Zealand
English-UK
French-Canada
French-Switzerland
German-Germany
Italian-Italy
Japanese-Japan
Norwegian-Norway
Polish-Poland
Portuguese-Portugal
Spanish-Spain
Spanish-Mexico
Spanish-US
Swedish-Sweden
For more information on this measure, for use and/or licensing, contact Dr. Brod at (+1) 415 381 5532 or at mbrod@thebrodgroup.net or by filling out the CONTACT FORM.
Achondroplasia Parent Experience Measure – Infant (APEM-I)
Copyright: Mery Brod, The Brod Group
Disease / Condition: achondroplasia
Population, Age: adult; parent/guardian of infant with achondroplasia aged < 2 years
Type of Clinical Outcome Assessment: PRO measure to assess the impact of having an infant or young child with achondroplasia on parents and families.
Outcome assessed: health-related quality of life; child symptoms
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Domains (n=5): Caretaking Responsibilities, Emotional Well-being, Worries and Concerns, Daily Well-being, and Child Symptoms
Number of items: 20
Recall: past two weeks
Language of Development: English for USA -
Pfeiffer KM, Brod M, Smith A, Viuff D, Ota S, Charlton RW. A qualitative study of the impacts of having an infant or young child with achondroplasia on parent well-being. Orphanet J Rare Dis. 2021;16(1):351. doi:10.1186/s13023-021-01978-z.
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Danish-Denmark
English-Australia
English-Great Britain
English-Ireland
English-New Zealand
French-France
Finnish-Finland
German-Austria
German-Germany
Italian-Italy
Norwegian-Norway
Portuguese-Portugal
Spanish-Spain
Spanish-US
Swedish-Sweden
For more information on this measure, for use and/or licensing, contact Dr. Brod at (+1) 415 381 5532 or at mbrod@thebrodgroup.net or by filling out the CONTACT FORM.
