Chloritoid stability and related paragenesis ; theory, experiments, and applications

Objective:

To assess attitudes regarding screening for disease risk among current or former participants in PPMI

Background:

Interest in conducting clinical trials in persons who may be at risk of developing PD is increasing. Few studies have addressed attitudes regarding risk profile identification and medical research in PD, information important for the design and conduct of future studies.

Design/Methods:

An online questionnaire assessing attitudes towards pre-diagnostic screening and research participation was administered to a subgroup of individuals with and without PD, currently or previously enrolled in PPMI.

Results:

452/523 (86%) invited participants responded (36% PD, 64% without PD). Mean age was 66 (range: 27–90). 51% were female. 95% completed education after high school. 59% had family history of PD. 90% of people with PD and 94% without PD reported they would participate in PD research even without personal benefit. Barriers to research participation were distance to research center (56% PD, 48% without PD), time (21% PD, 34% without PD) and effort (20% PD, 26% without PD). Concerns about privacy of health information were voiced by 40% of participants <age 40, but only 5% > age 80. Most expressed interest in testing for genetic and non-genetic PD risk profiles (89% PD, 87% without PD; 95% PD, 98% without PD, respectively). 50% were unsure of genetic testing availability (40% PD, 55% without PD). 6% expressed concerns about genetic testing (e.g., privacy, loss of insurance), but only 1% expressed concerns about non-genetic risk profile research.

Conclusions:

Interest in genetic and particularly non-genetic risk profile research was high in these motivated research study participants. Participants with PD expressed greater knowledge of research opportunities and genetic testing availability. Barriers to participation were identified by more than half, highlighting the need to reduce barriers when planning trials. Disclosure: Ms. Clark has nothing to disclose. Cheryl Meng has nothing to disclose. Miss Luan has received stock or an ownership interest from Pfizer. Dr. Brown has received personal compensation in the range of $0-$499 for serving as a Consultant for Rune Labs, Inc. Dr. Brown has received personal compensation in the range of $0-$499 for serving as a Consultant for Oscar Health. Dr. Brown has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for NEJM Knowledge Plus. The institution of Dr. Brown has received research support from Michael J. Fox Foundation. The institution of Dr. Brown has received research support from NIH. The institution of Dr. Brown has received research support from Biogen Inc. Dr. Ostrem has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Medtronic. Dr. Ostrem has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbott. Dr. Ostrem has received personal compensation in the range of $0-$499 for serving as a Consultant for Abbvie. Dr. Ostrem has received personal compensation in the range of $0-$499 for serving as a Consultant for Alkahest. Dr. Ostrem has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Acadia. The institution of Dr. Ostrem has received research support from Neuroderm. The institution of Dr. Ostrem has received research support from Biogen. The institution of Dr. Ostrem has received research support from Boston Scientific. Dr. Chahine has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gray Matters Technology. The institution of Dr. Chahine has received research support from UPMC. The institution of Dr. Chahine has received research support from MJFF. The institution of Dr. Chahine has received research support from Biogen/Parkinson Study Group . Dr. Chahine has received publishing royalties from a publication relating to health care. Dr. Luthra has nothing to disclose. Dr. San Luciano has received research support from NIH (NINDS). Dr. Marek has received personal compensation for serving as an employee of IND. Dr. Marek has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for invicro. Dr. Marek has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Roche. Dr. Marek has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Marek has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biohaven. Dr. Marek has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for takeda. Dr. Marek has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alkahest. Dr. Marek has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Denali. Dr. Marek has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Astellas. Dr. Marek has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bial. Dr. Marek has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biohaven. Dr. Marek has received research support from Michael J Fox Foundation. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for CNS Ratings . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cadent . Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Adamas . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Lundbeck. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Kyowa Kirin. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Parkinson Study Group (Biogen). Dr. Tanner has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Acorda. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from BioElectron Technology Crporation . The institution of Dr. Tanner has received research support from Biogen Idec . The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from Parkinson Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Scientific Advisor with Australian Parkinson9s Mission .