PRESS & NEWS

Sophisticated Staff Coordinates New ALLFTD Study

ALLFTD-staff

Unlimited cell phone plans are a must for the two program managers who are charged with overseeing the day-to-day operation of the new ALLFTD Study, especially since each resides in a different time zone and the study’s sites span the United States and Canada. As ALLFTD program managers, Leah Forsberg, Ph.D., with Mayo Clinic in Rochester, Minnesota,…

Unlimited cell phone plans are a must for the two program managers who are charged with overseeing the day-to-day operation of the new ALLFTD Study, especially since each resides in a different time zone and the study’s sites span the United States and Canada.

As ALLFTD program managers, Leah Forsberg, Ph.D., with Mayo Clinic in Rochester, Minnesota, and Hilary Heuer, Ph.D., with the University of California, San Francisco (UCSF), together serve as the linchpin that connects the various parts of the study so it functions as a unit. They coordinate between the study’s principal investigators (also known as the study PIs) who oversee the entire research project, and each site’s study team including its PI, study coordinator, and other team members.

“As part of the ALLFTD Executive Team we coordinate with different parts of the ALLFTD team to make decisions about how the study should be conducted, and then Leah and I attempt to implement those decisions,” Dr. Heuer explained. “Our study responsibilities overlap quite a bit, but we each have certain components of ALLFTD management that we primarily manage.”

In the search for answers to treatments and a cure for frontotemporal lobar degeneration (FTLD), it takes many dedicated people serving in a variety of roles to set up, oversee, and administer the new multisite cooperative ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration Study, more commonly called ALLFTD.

A research consortium, ALLFTD merges Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) to create a network of 19 centers in North America that are committed to FTLD research. This extensive research consortium is made up of world experts on FTLD, led by the three ALLFTD PIs: Dr. Brad Boeve, Mayo Rochester, and Dr. Adam Boxer and Dr. Howard “Howie” Rosen, UCSF. Its aim is to advance understanding of FTLD and support the development of treatments for these progressive neurodegenerative disorders.

Each study location has at least one site PI and a study coordinator, but most sites have a team of staff who play a large role in making the study successful at their site. “At most sites, it’s up to the study coordinators to work with their site PI to implement the study requirements at their facility,” Dr. Forsberg explained.

Please note that this glossary is available to help you understand the scientific words used in this article. Glossary terms are shown in bold the first time they appear.

INCORPORATING THE OLD AND THE NEW

Because ALLFTD is an extension of ARTFL and LEFFTDS, any previous ARTFL or LEFFTDS study participant will be encouraged to continue participating in research by joining ALLFTD. Site facilities, visits, and staff will mostly remain the same from the previous two FTLD research studies. Some sites have new staff and study coordinators who are learning about FTLD research for the first time while other sites have seasoned personnel.

“All of the study coordinators are incredible, with varying degrees of experience and familiarity with FTLD. We’re really lucky to have such a great group of coordinators working on this study,” said Dr. Forsberg.

“Many of the ALLFTD study procedures are similar (to the ARTFL/LEFFTDS studies),” noted Dr. Heuer, “but we’ve added some new study elements that we’re really excited about. For example, cognitive testing, which we used to do on a laptop computer, is now going to be done on a tablet. I think that our research participants will like the new versions of these cognitive tests.”

ALLFTD participants will have a neurological exam with a clinician, tests of memory and thinking, brain imaging, blood draw, and questionnaires for the participant and their study partner to complete. Dr. Heuer explains, “all of these different components add up, so it’s not uncommon for a visit to last multiple days.” Each visit is between two to four days depending on the site availability, resources, and scheduling. For example, study coordinators must find and schedule available rooms that the clinician or ALLFTD team member need for each visit procedure.

Many of the visit-specific details are determined by the structure of a site as well as the site investigator. At some locations, the primary investigator is solely working on the ALLFTD study, and at others the PI may be involved with multiple studies and have several support staff personnel to assist them.

“Each site has a flow that works really well for them,” said Dr. Forsberg. “We don’t mandate that things happen in a specific order so that each site can conduct the visit in a way that works best for them. This can make managing the study challenging because each site is different, especially because we want to provide consistent guidance on how visit procedures should be done so we’re all collecting data similarly. More often than not it’s a fun challenge; and as long as we understand how things work at each site, we can figure it out so the study runs smoothly and consistently.”

STUDY COORDINATORS

The study coordinator’s routine can vary greatly from day to day, but typically it involves interaction with participants, whether recruiting, scheduling, or conducting in-person visits. After each study visit, there are quite a few tasks needed to finish the visit, including data entry, payment for travel or participation, and following up with study partners.

Study coordinator responsibilities vary by site, adding to the complexity of coordinating this large research study. For example, at Mayo Rochester the study coordinators are supported by associate clinical research coordinators who help with the scheduling, data entry and see participants (especially when there is a family at the clinic for their research visit) and psychometrists who do the memory and thinking tests.

“However, at Mayo Jacksonville the study coordinator does the job duties listed above and administers the memory and thinking tests,” Dr. Forsberg said. “Each site has a different number of study staff assisting with each study visit, both pre- and post-visit activities.”

“At UCSF the study coordinators do all of the scheduling themselves as well as help with administering tests,” Dr. Heuer explained.

“Even if their responsibilities vary by site, the ALLFTD study coordinators work to make the whole visit flow smoothly for the participant,” she said. “They are a busy group, and we couldn’t do it without them.”

PROGRAM MANAGERS

The program managers are a busy pair, too.

Dr. Forsberg earned her degree in medicinal chemistry before transitioning from bench work to clinical research. She started her ALLFTD career as a research coordinator working on ARTFL and LEFFTDS and then moved into her role as an ALLFTD project manager.

Dr. Heuer’s degree in neurophysiology, and ocular motor control led her into the FTLD field to work on eye movement deficits in persons affected by progressive supranuclear palsy (PSP). She continues to be involved in eye movement research while she serves as an ALLFTD project manager.

“It's really exciting to me that I am working on something clinically important for people impacted by FTLD,” Dr. Heuer said. “While I’m not directly working with them, I’m doing something that could eventually make people’s lives better.”

While neither scientist will see ALLFTD participants on a regular basis, they do interact with people who reach out through the study's website: https://www.allftd.org. In addition, they contribute to writing and administering grants and coordinating with all of the ALLFTD study teams and scientific researchers.

Dr. Heuer works more with the investigators, data management, and data quality issues; Dr. Forsberg focuses her efforts on working with the study coordinators and other staff on day-to-day operations and visit procedures.

“Generally, I think we have a fantastic working relationship,” Dr. Forsberg said. “It has been easy to identify our strengths and to tailor our management of the study appropriately.”

When asked how long they have been working together, Dr. Heuer laughed when Dr. Forsberg quickly replied, “Forever.” What may seem like forever, has only been about three years. Dr. Heuer’s involvement with ARTFL started with the grant proposal (study inception) in late 2013, and shortly thereafter she began working on LEFFTDS. Dr. Forsberg joined the ARTFL and LEFFTDS team at the Mayo Clinic in Rochester in late 2017.

In addition to the numerous phone calls and emails, teleconferencing has boosted the duo's productivity. Scheduling can be a challenge since they work in different time zones. Dr. Heuer is located in California, and Dr. Forsberg is now based in Colorado.

“We’ve found a really nice management rhythm, which involves multiples phone calls a day generally focused on who will address an issue or tackle which to-do list items and what hikes we plan to do the next weekend (well pre-COVID that is),” commented Dr. Forsberg.

THE FUTURE WITH ALLFTD

They are both excited about ALLFTD and the new study features. For example, ALLFTD will follow all participants annually (longitudinally), previously only those with a family history of FTLD were seen annually. Additionally, there will be more comprehensive biospecimen research analyses.

“We’ve already learned a lot about neurofilament, which is a protein in plasma that indicates neurodegeneration,” Dr. Heuer said. “We will be learning a lot about different biomarkers in ALLFTD. Identifying new biomarkers, both biofluid and imaging markers, are a main reason we’re doing this study because they will hopefully lead to new therapeutic treatments in the near future.”

ALLFTD has a robust data analysis planned, analyzing more biomarkers than previous studies. These scientific analyses will help answer questions such as: What (biomarker) can be measured that might indicate disease onset or progression? What are the possible targets for disease modification?

“It’s exciting to have ARTFL and LEFFTDS combined in order to do more longitudinal research. This allows us to see rates of progression, and learn more about what might influence those rates of progression,” Dr. Heuer said. “We can also learn about disease onset in families with (gene) mutations. It’s wonderful to have so much data coupled with a wealth of experience from some of the best FTLD researchers in the country.”

“We are really lucky to work on this project and be surrounded by, I think, the best FTLD researchers, whether they are seeing participants or carrying out the bench research. Everybody is contributing to ALLFTD,” Dr. Forsberg stated. “I think the leadership that we get from the three study PIs is really amazing. They’ve done a lot of really hard work to get us to this point, and will continue to work hard as the leaders of ALLFTD.”

“Add to that, all the site PIs and study teams are really committed; we’re so grateful to have such incredible study personnel,” she said.

Dr. Heuer concurred with the assessment. “One of the really impressive things about this consortium is getting so many really excellent researchers to come together to work on a project like this, it’s amazing,” Dr. Heuer said. “And they are all incredibly caring clinicians and physicians as well.”

While it takes a sophisticated staff to operate all of the facets of the new study, it is the people affected by FTLD who take the time to visit the sites, participate in research, and contribute to science who make this all possible.

“We really appreciate the commitment to research from our participants. Choosing to participate in the ALLFTD study is a large time commitment. And their willingness to do it year after year is really amazing,” noted Dr. Forsberg. “We can dream up all the cool scientific questions, but without their support, the research doesn’t happen. We’re grateful and excited to have them participate.”

About 125 people attended the ALLFTD Team Meeting last fall. Their titles and job descriptions include:

SEE LIST OF SITES, SITE PIS & COORDINATORS
READ ABOUT ALLFTD STUDY
VIEW THE GLOSSARY
DOWNLOAD OR PRINT THIS ARTICLE

ALLFTD STUDY SITES, SITE PIS, & COORDINATORS

UNITED STATES

ALABAMA

University of Alabama, Birmingham

  • 1802 6th Ave. S, Birmingham, AL 35233
  • Principal Investigator: Dr. Erik Roberson
  • Study Coordinator: Samantha Brown - samanthabrown@uabmc.edu

CALIFORNIA

University of California, Los Angeles

  • 10833 Le Conte Ave., Los Angeles, CA 90095
  • Principal Investigator: Dr. Mario Mendez
  • Study Coordinator: Diana Chavez - dianachavex@mednet.ucla.edu

University of California, San Diego

  • 9500 Gilman Dr., La Jolla, CA 92093
  • Principal Investigator: Dr. Irene Litvan
  • Principal Investigator: Dr. Doug Galasko
  • Principal Investigator: Dr. Gabriel Leger
  • Study Coordinator: Aishwarya Niraula - a2niraula@ucsd.edu
  • Study Coordinator: Ivonne Arias - imarias@health.ucsd.edu

University of California, San Francisco

  • Memory and Aging Center, Department of Neurology
    675 Nelson Rising Ln., Suite 190, San Francisco, CA 91358
  • Principal Investigator: Dr. Howard Rosen
  • Principal Investigator: Dr. Dr. Adam Boxer
  • Study Coordinator: Lynn Bajorek - lynn.bajorek@ucsf.edu
  • Study Coordinator: Elise Ong - Elise.Ong@ucsf.edu

FLORIDA

Mayo Clinic, Jacksonville

  • 4500 San Pablo Rd. S, Jacksonville, FL 32224
  • Principal Investigator: Dr. Neil Graff-Radford
  • Study Coordinator: Heather Cissel - Cissel.Heather@mayo.edu

ILLINOIS

Northwestern University

  • Searle Building Rm. 11-467, 320 E. Superior, Chicago, IL 60611
  • Principal Investigator: Dr. Sandra Weindtraub
  • Study Coordinator: Emma Pollner - emma.pollner@northwestern.edu

MARYLAND

Johns Hopkins University

  • 1800 Orleans St., Baltimore, MD 21287
  • Principal Investigator: Dr. Chiadi Onyike
  • Study Coordinator: Ann Fishman - ann.fishman@jhu.edu

MASSACHUSETTS

Massachusetts General Hospital

  • 55 Fruit St., Boston, MA 02114
  • Principal Investigator: Dr. Brad Dickerson
  • Study Coordinator: Erin Krahn - ekrahn@mgh.harvard.edu

MINNESOTA

Mayo Clinic, Rochester

  • 200 1st St. SW, Rochester, MN 55905
  • Principal Investigator: Dr. Bradley Boeve
  • Study Coordinator: Kevin Nelson - Nelson.Kevin1@mayo.edu

MISSOURI

Washington University in St. Louis

  • 660 S. Euclid Ave., St. Louis, MO 63110
  • Principal Investigator: Dr. Nupur Ghoshal
  • Study Coordinator: Tina Nolte - nolte.tina@wustl.edu

NEVADA

Cleveland Clinic Lou Ruvo Center for Brain Health

  • 888 W. Bonneville Ave., Las Vegas, NV 89106
  • Principal Investigator: Dr. Aaron Ritter
  • Study Coordinator: Faye Luong - luongf@ccf.org

NEW YORK

Columbia University

  • 630 W. 168th St., New York, NY 10032
  • Principal Investigator: Dr. Edward Huey
  • Study Coordinator: Masood Manoochehri - mm2626@cumc.columbia.edu

NORTH CAROLINA

University of North Carolina, Chapel Hill

OHIO

Case Western Reserve Medical Center

PENNSYLVANIA

University of Pennsylvania

TEXAS

Nantz National Alzheimer Center

  • 6560 Fannin St., Scurlock Tower, 8th Floor, Houston, TX 77030
  • Principal Investigator: Dr. Belen Pascual
  • Principal Investigator: Dr. Joseph Masdeu
  • Study Coordinator: Victoria Arbones - varbones@houstonmethodist.org

WASHINGTON

University of Washington

  • 1959 NE Pacific St., Seattle, WA 98195
  • Principal Investigator: Dr. Kimiko Domoto-Reilly
  • Study Coordinator: Christina Caso - cdcaso@uw.edu

CANADA

University of Toronto

  • Tanz Centre for Research in Neurodegenerative Diseases
    Krembil Discovery Tower, 4th Floor - 4KD481
    60 Leonard Ave., Toronto, ON M5T 0S8
  • Principal Investigator: Dr. Carmela Tartaglia
  • Study Coordinator: Cristina Salvo - cristina.salvo@uhn.ca
  • Study Coordinator: Behnaz Ghazanfari - behnaz.ghazanfari@uhnresearch.ca

University of British Columbia

  • UBC Hospital- Koerner Pavilion
    2211 Wesbrook Mall, Vancouver, BC V6T 2B5
  • Principal Investigator: Dr. Ging-Yuek Robin Hsiung
  • Principal Investigator: Dr. Ian Mackenzie
  • Study Coordinator: Jessica Luk - jessica.luk@vch.ca
  • Study Coordinator: Rachel Freid - Rachel.Freid@vch.ca
  • Study Coordinator: Yasmin Banga - yasmin.banga@vch.ca

Together we can find a cure for ftd

The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

Your privacy is important! We promise to protect it. We will not share your contact information.

Read Full Privacy Statement

< Back to Home