Roadmap No diagnosis Research & Registries

Engaging with clinical trials (research studies) associated with signs/symptoms or following their progress can provide insights into new information and treatments under investigation.

Through collection of health information, patient registries can build further knowledge and understanding about specific signs/symptoms including disease associations as well as target areas for management improvement and research.   

Resources

Government sites with information about research participation and directories of current trials- search by keywords and symptoms.

• Clinical Research and You | National Institutes of Health
• Clinical Trials | NIH
• Australian Clinical Trials | Australian Government
• Orphanet | Research and Trials
• ResearchMatch

Examples of research studies & registries based on signs/symptoms

Child Neurology Foundation.

• Child Neurology Foundation | Clinical Trials

Immune Deficiency Foundation.

• Immune Deficiency Foundation | Participating in clinical trials

The Childrens Heart Foundation.

• Children's Heart Foundation | Congenital Heart Defects Research

Congenital Heart Alliance of Australia and New Zealand (CHAANZ). 

• CHAANZ | Participant information
• CHAANZ | Congenital Heart Disease Registry

International Skeletal Dysplasia Registry (ISDR).

• ISDR Registry | Patients & Families

Sydney Children’s Hospital Network registry for neurological disorders.

• Kids Research | NeuroConnect Registry

Epilepsy Society UK.

• Epilepsy Society | Research 

Suggest a resource: send email to gcwg@udninternational.org​