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

  • 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

    1. 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.

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

  • 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.

  • Chinese for China
    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

  • 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.

  • 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

  • Domains (n=2): Emotional Well-being and Caretaking Responsibilities
    Number of items: 12
    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 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.

    2. 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.

  • 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

  • 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

    1. 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.

  • 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.