Parkinson's Progression Markers Initiative 2.0 Remote Study (PPMI)
Looking at Remote Data for Parkinson's Risk
Tatiana Foroud
Primary Investigator
Brief description of study
Detailed description of study
- Questionnaires should take 5-10 minutes to complete. Applicable questionnaires will be visible based on cohort and study stage/status
- .Participants will complete the University of Pennsylvania Smell Identification Test (UPSIT). This is a set of scratch and sniff, multiple choice questions to assess the ability to correctly identify odors.
- Participants will also enter information online about daily activities and may be asked to provide a saliva sample.
- Study personnel will communicate with subjects via the participant portal, through email, and phone conversation. There will be no in-person interactions between IU study personnel and study participants.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Healthy
-
Age: 30 years - 100 years
-
Gender: All
Inclusion Criteria for full PPMI Remote Data Collection Protocol:
1. Enrolled in the PPMI Online study, or otherwise identified in pre-existing cohorts
2. Male or female age 60 years or older (except age 30 years or older for SNCA, or rare genetic mutations, such as Parkin or Pink1)
3. No self-reported PD, other parkinsonism, or dementia
4. Ability to provide informed consent electronically
5. Ability to complete remote assessments electronically
AND
7. Meets any of the following criteria:
a) Known PD associated mutation carrier - LRRK2, GBA, SNCA, or rare genetic mutations (such as Parkin or Pink1)
b) History of polysomnography (PSG) REM behavior disorder (RBD)
c) University of Pennsylvania Smell Identification Test (UPSIT) test documenting study thresholds for hyposmia
d) Known synuclein biopsy positive
e) Known health care information based on PPMI Online PRO measures, including affected first degree relative, motor changes, autonomic dysfunction, sleep disorder, depression, anxiety, and fatigue.
Exclusion Criteria for full PPMI Remote Data Collection Protocol
1. Received a diagnosis of Parkinson’s disease or related neurodegenerative disorder.
2. Received a clinical diagnosis of dementia.
3. Has been diagnosed with a significant medical or psychiatric illness that may limit ability to participate.
This study investigates if information collected remotely can identify people at risk of developing Parkinson's Disease. Parkinson's Disease is a condition that affects movement and can cause tremors and stiffness. The study aims to find ways to recognize these risks early by using data from the internet, mail, home visits, or phone apps.
Participants will complete online questionnaires about their daily activities and take a smell test called the University of Pennsylvania Smell Identification Test. They may also need to provide a saliva sample. Communication with study staff will happen through a secure website, email, or phone, without any in-person meetings.
- Who can participate: People aged 60 or older, or 30 or older with certain genetic conditions, can participate if they haven't been diagnosed with Parkinson's or dementia. They must be able to consent and complete assessments online. Participants should meet specific criteria, like having certain genetic mutations or symptoms related to Parkinson's.
- Study details: Participants will fill out online surveys and a smell test, and might give a saliva sample. All communication is online or by phone. A placebo is not involved in this study.
