Not yet recruitingNAINTERVENTIONAL

Prevention of Medical, Social, and Psychosocial Risks Following a Parkinson's Disease Diagnosis: A Pilot Study

This study explores a new support program for people recently diagnosed with Parkinson's disease, and their family members (caregivers). Getting a Parkinson's diagnosis can be a big shock. This program aims to provide better support and information right from the start. It involves using questionnaires to understand people's needs and offering resources like a special booklet and website. The goal is to see if this adaptable, home-based program can help prevent common medical, social, and emotional problems. Researchers hope it can lead to better acceptance of the disease, improved quality of life, and stronger understanding between patients, caregivers, and their doctors.

At a glance

Status

Not yet recruiting

Phase

Sponsor

University Hospital, Toulouse

Enrolment target

100

Start

01 Sep 2026

Estimated completion

31 Mar 2028

Parkinson Disease

What is this study about?

Imagine you've just been told you have Parkinson's disease. This can be a really difficult time, not just for you but also for your family. Often, people feel unprepared and don't know where to turn for help. While doctors and specialists are improving how they support people with Parkinson's, there's still a need for more help, especially right after diagnosis.

This study aims to make that initial period easier. Researchers have developed a new, flexible support program designed to be used at home. This program includes useful tools like a special booklet and a website packed with information. It's not just for the person with Parkinson's; caregivers can use it too.

The main goal of this study is to see if this new program can help prevent common challenges that people face after a Parkinson's diagnosis. This includes medical issues, social difficulties, and emotional well-being. By offering personalised support and information from the very beginning, the researchers hope to help people better cope with the disease, improve their quality of life, and work better with their doctors on treatments and day-to-day management.

Key takeaways

Tests a new support program for people newly diagnosed with Parkinson's and their families.
Uses questionnaires, booklets, and a website for support and information.
Aims to help prevent medical, social, and emotional difficulties after diagnosis.
Open to adults over 18 who have been diagnosed within the last month.
Caregivers can also participate alongside patients.

Who may be eligible?

To join this study, you would need to be an adult (over 18 years old) who has been diagnosed with Parkinson's disease very recently, within the last month.

If you are a primary caregiver for someone who has just been diagnosed with Parkinson's disease (again, within the last month), you could also take part. Even if the caregiver doesn't want to join, the patient can still be included.

However, you wouldn't be able to participate if you live in a care home or if you live in an area that isn't covered by the specialist teams running this study. Also, if you simply don't wish to take part, that's perfectly fine.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been diagnosed with Parkinson's disease within the last month?
Do you live in an area where specialist teams supporting this study are available?
If you are a caregiver, is the person you care for newly diagnosed (within 1 month) and over 18?
Are you willing to complete questionnaires?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you will be asked to complete some questionnaires. If you are a patient, you will fill out questionnaires about your experiences. If you are a caregiver, you will also complete questionnaires. The study is about understanding your needs and the effectiveness of providing information and support through things like a booklet and a website. This study does not involve taking new medication or having extra doctor's appointments. The exact number of questionnaires and how often you complete them would be explained to you in more detail if you choose to participate.

Potential risks and benefits

Taking part in this study might help improve support for people newly diagnosed with Parkinson's disease in the future. You might find the information and tools provided helpful for managing your own or your loved one's condition. The main 'risk' is the time it takes to complete the questionnaires. You are free to stop participating at any point, for any reason, without it affecting your usual medical care.

Locations (1)

Service de Neurologie Cognitive, Comportementale et Mouvement anormaux CHU de Toulouse, Hôpital Pierre Paul Riquet, 31059 Toulouse Cedex 9
Verified postcode
Toulouse, France

Common questions

What is the main goal of this study?

The goal is to test a new support system for people recently diagnosed with Parkinson's disease and their families, to see if it helps manage the challenges that come with the diagnosis.

Who can take part in this study?

Adults (over 18) newly diagnosed with Parkinson's (within the last month) and their primary caregivers can take part, as long as they live in the study's covered areas.

What will I have to do if I join?

You will be asked to fill out questionnaires to share your experiences and give feedback on the support materials like a booklet and website.

Does this study involve new medicines?

No, this study focuses on providing information and support tools, not on new medications.

Can I leave the study if I change my mind?

Yes, you are free to withdraw from the study at any time without it affecting your medical care.

How to find out more

Fabienne ORY MAGNE, MD

ory.f@chu-toulouse.fr 0561775687 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.