REVEAL -CP - Screening Study for People with Cerebral Palsy Symptoms — Scope | Disability forum
Please read our updated community house rules and community guidelines.

REVEAL -CP - Screening Study for People with Cerebral Palsy Symptoms

Options
Richard_Scope
Richard_Scope Posts: 3,650 Scope online community team
edited June 2021 in Cerebral palsy

WHEN YOUR CEREBRAL PALSY SYMPTOMS GO UNEXPLAINED, A RARE GENETIC DISORDER MAY BE THE CAUSE

For people diagnosed with cerebral palsy with no known cause or those with CP-like symptoms that look like cerebral palsy with no known reason, please consider this research study that may help identify if there is a rare underlying cause for your or your child’s disorder.

The REVEAL-CP study is hoping to understand how many people with symptoms that look like cerebral palsy, but with no known reason for these symptoms, may actually have Aromatic L-Amino Acid Decarboxylase deficiency (or AADC-d), a very rare genetic disorder that affects the brain, causes abnormal muscle tone and affects how a person develops. Many of the symptoms of AADC deficiency are similar to cerebral palsy symptoms. This is a screening research study- no medications or treatments are being offered. However, parents/patients may find out if AADC deficiency is the cause of their cerebral palsy symptoms. The study involves up to two blood tests.

Although there is currently no cure for AADC deficiency, early diagnosis can lead to better disease management. If you are interested in learning more about this screening study, please speak with your or your child’s physician or visit https://www.reveal-cp.co.uk/ for more information.


Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

'Concerned about another member's safety or wellbeing? Flag your concerns with us.

Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,650 Scope online community team
    Options

    The above post has been moderated and checked by the Scope Community Team.  Our website contains links to third parties’ websites for your information only. We have no control over the content of those sites or resources and we don’t endorse or accept liability for their content. 

    Read the full Terms and Conditions  and the Community Guidelines 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

Brightness