Radial Club Hand – Research project

Thank you for your interest in this research project dedicated to Radial Club Hand, a rare congenital condition of the upper limb that can significantly affect daily activities, function, and quality of life.
Because this condition is rare, many questions remain unanswered regarding patients’ experiences and long-term needs. This international study aims to better understand its impact through the experiences of individuals living with Radial Club Hand and their families.

Click here to access the anonymous questionnaire

This study is conducted by a team of clinicians and researchers specialized in congenital upper limb differences from the STREAM Rare Disease Reference Center at Armand Trousseau Hospital – Sorbonne University, in collaboration with Amsterdam University Medical Center.

Study objective

The questionnaire aims to evaluate how Radial Club Hand affects different aspects of daily life, including:

  • functional activities,
  • independence,
  • pain,
  • social participation,
  • well-being and quality of life.

Why participate?

As Radial Club Hand is a rare condition, every response is valuable.

The information collected will help:

  • improve medical knowledge,
  • better understand patients’ needs,
  • support future research and clinical care.

Privacy & Confidentiality

Your privacy is important to us.

  • Anonymous questionnaire
  • Secure data storage
  • Research purposes only

Previous publications

Radial club hand treated with soft-tissue distraction and subsequent pin stabilization: mid- to long-term results

Authors: Pfister G, Le Hanneur M, Bachy M, Fitoussi F.

Journal : J Hand Surg Eur Vol.

For more info

Do Patient-Specific Guides accurately correct lower limb deformities in children? Preliminary outcomes

Authors: Nguyen-Khac V, Simon AL, Ilharreborde B, Gajny L, Fitoussi F, Alves A, Vialle R, Saghbini E, Bachy M.

Journal: Orthop Traumatol Surg Res (OTSR)

For more info

Neonatal separation of the distal humeral epiphysis can be treated orthopedically without reduction

Authors: Brichni M, De Tienda M, Bachy M, Caillard G, Bourgeois E, Jeandel C, Pannier S, Delpont M.

Journal: Orthop Traumatol Surg Res. (OTSR)

For more info

State of the art review: The pathogenesis and management of Madelung deformity

Authors: Farr S, Zlotolow DA, Bachy M, Peymani A, Hülsemann W, Winge MI.

Journal:  J Hand Surg Eur Vol.

For more info

The main results of the study will be shared on this page once data analysis is completed.

For any questions regarding this study:

radialclubhandproject@gmail.com

Thank you for your participation and support.