Lack of Awareness of Symptoms (Anosognosia) in PD: An Observational Study for People With Parkins… (NCT02561715) | Clinical Trial Compass
WithdrawnNot Applicable
Lack of Awareness of Symptoms (Anosognosia) in PD: An Observational Study for People With Parkinson's
Stopped: Lack of funding
United Kingdom0Started 2015-08-01
Plain-language summary
Anosognosia is a recognised condition for people with Parkinson's, and is the result of physiological damage on brain structure.
Surgical Parkinson Disease Nurse Specialists have noticed that when reviewing the pre-surgery videos 12 months post-DBS, patients have forgotten and are shocked at how bad their symptoms were prior to surgery (personal communication), which may not be reflected in the change in QoL reported.
This lack of awareness, while possibly helpful in everyday life, may lead to effective treatments looking ineffective, or the benefits in QoL of effective treatment appearing reduced. This confound may not only reduce the apparent effectiveness but also the related cost-effectiveness of treatment. As cost-effectiveness is determined by both size and longevity of an effect, current methods of capturing these data may be suboptimal.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Clinical diagnosis of Parkinson's as defined by the UK PDS Brain Bank Criteria
Exclusion Criteria:
* Unable to complete questionnaires in English.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This study on anosognosia in Parkinson's has a status of 'withdrawn,' which means it never enrolled participants — can you explain what that means for someone interested in this topic, and whether there are other active studies looking at lack of symptom awareness in Parkinson's?
2Since this study was focused on anosognosia, which is when someone with Parkinson's may not be aware of how severe their own symptoms are, how would my doctor or care team currently assess whether that's something affecting me or my loved one?
3The trial was designed to measure improvement in a person's ability to recall the extent of their condition — are there any existing clinical tools or therapies already being used in practice to help people with Parkinson's better recognize and remember their own symptoms?
4Because this study was withdrawn before it started, is there any published research or completed work on anosognosia in Parkinson's that my doctor could point me to, so I can better understand what is currently known about this issue?
5If lack of awareness of symptoms is a concern in my or my family member's case, how does that affect treatment planning, and are there specialist referrals — such as to a neuropsychologist — that might be worth pursuing outside of a clinical trial setting?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Improvement of ability to recall extent of condition