As director of clinical trial strategies, I work on the recruitment and retention efforts for the PPMI study. Thanks to a suggestion from the PPMI Recruitment and Retention committee, last year we started hosting events for PPMI participants to thank them for their commitment and update them on the study’s progress. Since then, I’ve attended almost 20 events, giving me the opportunity to meet the people who inspire my daily work.
This past Sunday, for example, I traveled to New Haven, CT, for the second annual PPMI retention event at the Institute for Neurodegenerative Disorders. Last year, we had about 25 people in attendance. This year, we had over 70! Many participants, whether they were a newly diagnosed patient or someone participating as a control, brought along a spouse, sibling or friend so that they, too, could learn more about the study.
When I speak at these events, I tell participants that meeting them is the best part of my job. And it is. When I’m not at these events, I’m sitting at a desk — or in a meeting — thinking about how to find more people like them for PPMI and how to keep them engaged throughout this five-year study. Getting to shake the hands, share the progress their participation is making possible, and say thank you is perhaps the greatest reward I could ask for.
I am truly humbled by those I’ve encountered through these events — people who face many new challenges with their recent diagnosis and yet are willing to do even more through PPMI. The control volunteers are just as inspiring. Some are spouses of PD patients who can’t participate; others are brothers-in-law, golf buddies or dinner club friends. At this weekend’s event, there was a husband of a patient; he was a control volunteer whose son-in-law lives near another PPMI site and is also enrolled as a control. Wow.
But I’m also amazed by what PPMI is doing for the participants. Across the study sites, mini support groups have sprung up as patients at this similar stage of disease connect with each other. Another recently diagnosed patient shared with me what a helpful resource PPMI has been for her, in that she’s able to see an expert every three months and ask questions as they come up. “I feel so cared for,” she said. “I can’t imagine navigating this disease without PPMI.”