Beyond Achondroplasia

Growing together with Clara

Update: Focus groups with teenagers and parents- in the USA

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There are updates for the new study to understand achondroplasia organized by Global Perspectives and will be conducted by ICON, a contract research organization, on behalf of a pharmaceutical company.

This study has the purpose to:

  1. Understand the impact of achondroplasia on daily life activities,
  2. Understand opinions on possible treatments and how treatment decisions are made
  3. Get feedback on a draft survey designed for a future study

Image 1 – Get to know your people through focus groups. Credits: Faithful Citizen

 

Requested participants

  • Individuals living in the USA and willing to travel to New York
  • Individuals with achondroplasia with ages between 13 and 17 years old and one parent

Dates and location

This will be held during one day over a weekend in New York, USA, on 8th September. Participants will be invited to participate in an in-person focus group day, consisting of three discussions (each lasting 90 minutes).

Compensation

Participants will be compensated for their time and for their daily life expertise in achondroplasia with an amount of $450 ($900 per family). All travel expenses will be covered.

 

Invitation to participation

Sonia López, Global Perspectives Senior Project Manager invitation letter:

My name is Sonia López and I work at Global Perspectives, an international Market Research agency specialized in healthcare.

I was wondering if you would be interested or know anyone who would be interested in the paid study below.

We are currently looking for parents of children with achondroplasia to take part in 3 discussion groups in New York or eventually remotely.  Eligible participants will be compensated (insert incentive amount) for their time.

This is an exciting opportunity to provide insights directly to researchers who are interested in understanding more about living with achondroplasia. The purpose of the study is to understand the impact of achondroplasia on daily life activities.

If you are interested or would like to receive further information on this study, please feel free to contact me at sonia@global-perspectives.eu

Sincerely,

Sonia López

 

Important note

The pharmaceutical company will not receive any identifying information about the participants in this study, and any information provided by the participants as a part of the study will be reported in a way that protects privacy. There will be no medical treatment being provided as part of this study.

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