RecruitingOBSERVATIONAL

FARD (RaDiCo Cohort) (RaDiCo-FARD)

This study, called FARD (RaDiCo-FARD), aims to understand the daily impact and challenges faced by people living with nine specific rare skin conditions in the UK. These conditions include things like Inherited Epidermolysis Bullosa and Neurofibromatosis Type 1. Researchers want to get a complete picture of how these illnesses affect patients and their families, not just physically, but also emotionally, socially, and financially. They will do this by asking participants to fill out a special questionnaire about their experiences and by looking at the types of support and resources families use to manage the condition. The goal is to gather information that can help improve care and support for people with these rare skin diseases.

At a glance

Status

Recruiting

Sponsor

Institut National de la Santé Et de la Recherche Médicale, France

Enrolment target

900

Start

07 Mar 2018

Estimated completion

07 Mar 2027

Inherited Epidermolysis Bullosa Ichthyosis Ectodermal Dysplasia Incontinentia Pigmenti Neurofibromatosis Type 1 Albinism Pemphigus Mucous Membrane Pemphigoid Palmoplantar Keratoderma

What is this study about?

This study, known as FARD, is designed to understand what it's like to live with a rare skin condition. It focuses on nine specific conditions that can be very challenging. The main idea is to look at the 'burden' of these diseases, which means understanding all the different ways they affect a person's life – not just their physical health, but also their feelings, their social life, and even their financial situation. This study isn't testing new medicines or treatments; instead, it's about listening to the experiences of patients and their families.

The researchers will use two main ways to gather information. Firstly, participants will complete a special questionnaire. This questionnaire helps to measure the day-to-day impact of the condition and how it might lead to changes in care or lifestyle. It's designed to be filled out by patients themselves, or by parents if the patient is a child. Secondly, the study will look at all the different types of support and resources families use to manage the disease, whether those are medical appointments, community groups, or other forms of help.

The reason this study matters is to get a clearer picture of the real-world challenges faced by those with rare skin conditions. By understanding the full 'burden', researchers and healthcare professionals can work towards better support systems, improved treatments, and more tailored care plans. Your experiences can help make a difference for others living with similar conditions.

Key takeaways

This study focuses on understanding the daily life impact of nine rare skin conditions.
It aims to understand physical, emotional, social, and financial burdens on patients and families.
Participation involves completing a detailed questionnaire about your experiences.
This is an observational study, so it will not change your current medical treatment.
Your input could help improve care and support for people with rare skin diseases.
The study includes both children and adults of any age.

Who may be eligible?

To take part in this study, you or your child must have been officially diagnosed with one of the nine rare skin conditions being studied, such as Inherited Epidermolysis Bullosa or Albinism. You also need to receive your regular care for this condition at one of the specialist FIMARAD healthcare centres in the UK.

Participants, or parents if the participant is a child, must be able to understand the survey questions and give their permission to join the study. This means you'll need to sign a consent form to show you agree to take part.

You wouldn't be able to join if your diagnosis isn't fully confirmed, if you don't receive your care through the FIMARAD network, or if you (or your child's parents) are unable to understand the survey or don't wish to sign the consent form.

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.

Do you (or your child) have a confirmed diagnosis of one of the nine rare skin conditions listed?
Do you receive your regular medical care for this condition at a FIMARAD specialist centre?
Can you (or your child's parents) understand survey questions given in English?
Are you willing to sign a consent form to agree to be part of the study?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you will be asked to complete a questionnaire. This questionnaire will ask about how your rare skin condition affects different aspects of your daily life, including your health, feelings, social life, and finances. If the participant is a child, their parents will complete the questionnaire on their behalf. The study is observational, which means you won't be given any new treatments or asked to change your current medical care. There are no extra visits to the hospital or clinic beyond your usual appointments. The main involvement is completing this questionnaire, which you can do yourself at home. The total duration of your participation isn't specified, but it primarily involves this assessment.

Potential risks and benefits

There are no known physical risks associated with taking part in this study, as it only involves completing a questionnaire and doesn't change your medical care. The main benefit is that your experiences will help researchers understand the real-life impact of rare skin conditions, which can lead to better support and care for patients and their families in the future. You are free to withdraw from the study at any time without giving a reason, and this will not affect your ongoing medical care in any way.

Locations (15)

Hôpital Avicenne
Verified postcode
Bobigny, France· Not yet recruiting
Hôpital des Enfants - Groupe Hospitalier Pellegrin
Verified postcode
Bordeaux, France· Not yet recruiting
Hôpital des Enfants - Groupe Hospitalier Pellegrin
Verified postcode
Bordeaux, France· Not yet recruiting
Hôpital Henri-Mondor
Verified postcode
Créteil, France· Not yet recruiting
Hôpital François Mitterrand
Verified postcode
Dijon, France· Not yet recruiting
Hôpital Dupuytren
Verified postcode
Limoges, France· Not yet recruiting
Hôpital de la Timone
Verified postcode
Marseille, France· Not yet recruiting
Hôpital Saint-Eloi
Verified postcode
Montpellier, France· Not yet recruiting
Hôpital l'Archet
Verified postcode
Nice, France· Recruiting
Hôpital Necker-Enfants Malades
Verified postcode
Paris, France· Recruiting
Hôpital Saint-Louis
Verified postcode
Paris, France· Recruiting
Hôpital Robert-Debré
Verified postcode
Reims, France· Not yet recruiting

Common questions

What kind of information will I be asked to share?

You'll be asked about how your rare skin condition affects your daily life, including your health, feelings, social life, and finances, through a questionnaire.

Do I need to visit the hospital more often for this study?

No, this study doesn't require any extra hospital visits. You'll continue with your usual medical appointments as before.

Will taking part change my current medical treatment?

No, this study is observational, meaning it won't change any of your current treatments or care plans.

Who can take part in this study?

Adults or children with a confirmed diagnosis of one of the nine specified rare skin conditions, who are cared for by the FIMARAD network and can understand the survey, can take part.

What will happen to the information I provide?

The information will be used to help researchers understand the full impact of rare skin conditions, aiming to improve future support and care for patients and families.

How to find out more

Christine BODEMER

christine.bodemer@aphp.fr + 33 1 44 49 46 72 Official trial record

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