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Parkinson's Families Project

Sponsor: University College, London

NCT ID: NCT02760108

View on ClinicalTrials.gov ↗

At a glance

What the study gets you
Health checks and monitoring — no treatment given
Type of study
Observational (no treatment given)
Time in hospital
In-person visits at study sites — visit count not specified by the sponsor
Drug or intervention
Not specified by the sponsor
How long the study runs
Study runs about 141 months (dates as stated)
About the drug or intervention
Not specified by the sponsor
Patient visit burden
Not specified by the sponsor
Type of study
Observing health over time
Ages
16 Years and over
Who
All
Number of participants
2,000
Started
2015-04
Last checked
2019-06

Plain English Summary

What is this study?

  • • Testing a new treatment for parkinson's disease
  • • Clinical study - 2,000 participants
  • • One person in every 500 has Parkinson's and around 127,000 people are living with the condition in the UK

Who can take part?

  • • Ages 16 Years and over
  • • Diagnosed with parkinson's disease

Where?

  • • London - Royal Free London NHS Foundation Trust
  • • London - University College London Hospitals NHS Foundation Trust

This is a simplified summary. Always discuss with your doctor before making any decisions.

About This Trial

One person in every 500 has Parkinson's and around 127,000 people are living with the condition in the UK. The aim of the study is to identify new genes that predispose or cause Parkinson's Disease or Parkinsonism. There is a pressing need to study the genetic makeup of family members both with and without Parkinson's. As families share a common genetic background, it is easier to find new Parkinson's genes by studying the genetic makeup of people with Parkinson's alongside other members of their families. We are particularly interested in studying the genetic makeup of two groups of people: 1. those who developed Parkinson's before the age of 45; and 2. those who have a family history of other relatives affected by Parkinson's. By identifying genetic factors that cause Parkinson's, we hope to understand more about the condition. Doing so will lead to the development of better diagnosis, improved disease models, and we hope in time, to the development of better treatment.

More detail

One person in every 500 has Parkinson's and around 127,000 people are living with the condition in the UK. Unfortunately, it is a progressive disease that has no cure. Many treatments are available that can improve or maintain someone's quality of life, but the investigators would like to develop treatments that can be used much earlier in the disease process. These could slow down the disease or prevent it from progressing further. For most people who develop Parkinson's there is no clear underlying cause. However, the investigators are particularly interested in the minority of people diagnosed with Parkinson's who have either early onset disease and/or other relatives affected with Parkinson's. The investigators believe that variations in inherited material (genes) can sometimes cause the disease, and this may run in families. This opens the door to a range of studies on the effects of gene variation at a nerve cell and brain level, which the investigators hope will lead to new targeted treatments. It is already known that some rare gene variants can cause Parkinson's. Some of these are inherited in what is called an 'autosomal dominant' way i.e. each child of a person with this type of gene change has a 50% chance of inheriting it. However, it is also known that not everyone who carries the change will go on to develop the disease. Some people appear to be protected against developing the disease and the investigators would like to understand this better. Other variants, particularly important in early onset Parkinson's are "recessive", and in this form of inheritance there is a very low risk to parents and children. The investigators are looking closely at the genetic makeup of people with Parkinson's in comparison with unaffected people and in comparison to unaffected and affected family members in order to find out more about which gene changes can cause Parkinson's. Following the identification of genetic variation that causes Parkinson's, in collaboration with the NHS and other researchers, the investigators plan to: 1) develop new NHS tests of Parkinson's and 2) develop new disease model which can act as a testbed for new treatments

Parkinson's DiseaseParkinsonism

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What we know so far

Condition· Matched your search
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Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.

Eligibility at a Glance

Key info

  • Age: 16 Years and over
  • Who can join: All genders

What the study is looking for

  • ✓Aged over 16 years

Who cannot take part

  • ✗Lack of capacity to consent to participate in the project.
See the full criteria
Inclusion Criteria: Clinical diagnosis of Parkinson's disease or parkinsonism, and either family history of Parkinson's/parkinsonism (first or second degree family member affected by Parkinson's or parkinsonism) AND/OR Early onset Parkinson's/parkinsonism (symptom onset before the age of 45 years) First or second degree family member of an Index Case, affected or unaffected by Parkinson's/parkinsonism. Aged over 16 years Exclusion Criteria: Lack of capacity to consent to participate in the project.

Where Is This Study? (2 UK sites)

Royal Free London NHS Foundation Trust

London NW3 2PF, United Kingdom

Recruiting
Site contact (verified)
Huw Morris, PhD, FRCPPrincipal Investigator

University College London Hospitals NHS Foundation Trust

London WC1N 3BG, United Kingdom

Recruiting
Site contact (verified)
Huw Morris, PhD, FRCPPrincipal Investigator

How to Get in Touch

Study Coordinator

Sponsor contact

CONTACT

02080168174 ion.pdresearch@ucl.ac.uk
Data sourced from ClinicalTrials.gov · Last verified: 2019-06