Modus Outcomes

Congratulations to all on the recently published article in Frontiers "A patient-centered qualitative evaluation of meaningful change on the NSAA and PUL in Duchenne Muscular Dystrophy". (Aviva Gillman Louise Barrett Jessica Mills Phoebe Heinrich Krystian Przydzial Bethany Ewens Gerrit Vandenberg Stefan Cano) This publication highlights the findings from n=69 semi-structured interviews with patients with Duchenne's muscular dystrophy (DMD), caregivers for individuals with DMD, and neuromuscular physiotherapists. The objective was to understand meaningful change on two prominent motor performance measures: the North Star Ambulatory Assessment (NSAA) for ambulatory patients and the Performance of Upper Limb (PUL) for non-ambulatory patients.   For both measures, perception of meaningful change included maintaining function and independence. There were specific and interesting findings for each measure related to the corresponding score changes classified as meaningful - click to read the full text. https://lnkd.in/eVfqzaKv Do you want to know more about meaningful change as it relates to COAs and psychometrics? Contact Qammer Azim to set up a meeting.   #COA #PRO #DMD #NSAA #PUL #MCID #MWPC #MID 

When your team spans the US, Canada, the UK, France, Cyprus, and New Zealand, time zones are always top of mind. But twice a year, when daylight saving time shifts the clock in some regions but not others, coordinating schedules takes a little extra effort.   At Modus Outcomes, our globally distributed team has learned to navigate time zone differences with flexibility and planning. Despite the challenges, we stay in sync and keep projects moving forward.   Being a part of a globally distributed team comes with its complexities, but it also brings valuable perspectives and around-the-clock collaboration. No matter where we are, we’re working together to advance patient-centered outcomes research.   No matter whether the sun is rising or setting where you are, the team at Modus Outcomes is moving forward together.   #GlobalTeam #PatientCenteredResearch #Collaboration #DaylightSavingTime #PCOR

February is Age-related Macular Degeneration (AMD) and Low Vision Awareness Month—a time to recognize the millions of individuals affected by AMD and related impairments such as geographic atrophy (or GA, an advanced form of dry AMD). At Modus Outcomes, we are committed to advancing research that amplifies the patient voice and improves understanding of the real-world impact of these conditions. We are proud to share one recent example of our collaborative research endeavors: “The MOSAIC Study: A Mixed-Methods Study of the Clinical, Emotional, and Financial Burden of Geographic Atrophy Among Patients and Caregivers in the US” was published in the journal 𝘊𝘭𝘪𝘯𝘪𝘤𝘢𝘭 𝘖𝘱𝘩𝘵𝘩𝘢𝘭𝘮𝘰𝘭𝘰𝘨𝘺 in August 2024. The article is available open access and includes a video abstract recorded by author Dr. Sophie J. Bakri. Congratulations to Stéphane Quéré and the authors and contributors (like Danielle Altman)—including the patients and caregivers who shared their experiences with GA. As we observe AMD and Low Vision Awareness Month, we reaffirm our commitment to research that centers on patient perspectives and drives meaningful change. By prioritizing patient-reported outcomes, we aim to contribute to a more comprehensive understanding of vision-related challenges and inform better care strategies. #VisionResearch #PatientReportedOutcomes #AMDAwareness #LowVisionAwareness https://lnkd.in/dx9t282e

NOTE: Rare Disease Day has been postponed. See FDA website for more information - https://lnkd.in/eeeBVJZb. At Modus Outcomes, our researchers are accustomed to working in rare disease contexts - rare cancer types, rare genetic disorders... We're grateful that this year's FDA-NIH Rare Disease Day is still scheduled for February 27-28. We will be attending virtually (registration is FREE and still open: https://lnkd.in/eEtRhvPy). This is an opportunity for everyone from patients and patient advocates to industry representatives and government staff to come together and put the discussion of rare disease front and center. For more information, go to https://lnkd.in/gk6hbAF.

This February, we choose to honor Black History Month in the US by highlighting the continual need for our research to include individuals from differing backgrounds to ensure we understand the experience of all people affected by a given disease. Without adequate representation across all stages of research and development, we are not obtaining the most scientifically rigorous results.   At Modus Outcomes, we remain committed to highlighting the voice of 𝐚𝐥𝐥 patients, whenever possible, in clinical decision making and patient focused drug development.    #BlackHistoryMonth #clinicalresearch #clinicaltrials #PFDD #research

🚀 Today marks the public launch of the SISAQOL-IMI Recommendations – fittingly, 🌎 World Cancer Day. (https://lnkd.in/eFX6BsWf) SISAQOL-IMI (Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints) is an international consortium of experts working collaboratively to develop recommendations on how to analyze Patient-Reported Outcomes data in cancer trials. As members of the consortium, Modus Outcomes is proud to have team members attending and presenting at this important event. Today’s launch will highlight key aspects of the recommendations, provide examples of stakeholder implementations, and feature a panel discussion on how various stakeholders can contribute to implementing the SISAQOL-IMI recommendations in cancer clinical trials. This event marks a significant milestone that celebrates and showcases the power 💪 of collaboration and the importance of patient-centered research in improving cancer care. #SISAQOL #CancerResearch #PatientReportedOutcomes #WorldCancerDay #ModusOutcomes #ClinicalTrials #CancerCare #Innovation

Next week, February 4 marks World Cancer Day (https://lnkd.in/drnuZeE). At Modus Outcomes, we have had the opportunity to conduct research with many different people with cancer. We have interviewed people with both common and very rare cancer types, as well as people in varying stages of disease. At the forefront of this work are the patients and families themselves. We are grateful to all who participate and make our research possible, including caregivers and loved ones. In acknowledgement of this year's World Cancer Day theme, #unitedbyunique, we honor the pledge to keep people at the center of care and explore new ways of making a difference for all.

Two weeks ago, we asked what was on your professional development reading list for the new year. The responses were less than overwhelming, so the team at Modus Outcomes thought we'd recommend a few of our latest publications based on work with our client-collaborators. These publications showcase the kind of work we’re passionate about —focusing on what really matters to patients and making sure their voices are heard: 1. "A Patient-Relevant Measurement Strategy to Assess Clinical Benefit of Novel Therapies for Non-metastatic Cutaneous Squamous Cell Carcinoma" (https://lnkd.in/evQpYkGF) 2. "Sustained benefits of imetelstat on patient-reported fatigue in patients with lower-risk myelodysplastic syndromes ineligible for, or relapsed/refractory to, erythropoiesis-stimulating agents and high transfusion burden in the phase 3 IMerge study" (https://lnkd.in/dPhzib8G) 3. "Patient Experience of Living With Hemophilia A: A Conceptual Model of Humanistic and Symptomatic Experience in Adolescents, Adults, and Children" (https://lnkd.in/egGarJ9h) Interested in learning more about how we can support your patient-centered outcomes research and digital health needs? Reach out to Qammer Azim for more details. #MOmentum #PatientExperience #PatientCentered #ClinicalTrials #OutcomesResearch #Innovation

With some new visitors to our page in the past few months, the team at Modus Outcomes wanted to reintroduce ourselves. We are a patient-centered outcomes research (PCOR) consultancy focused on bringing the patient voice to every stage of the drug development process. As scientifically rigorous and unfailingly collegial research collaborators, we work with companies as small as 10 employees to the largest multinational pharma firms. Our team is widely published and comprised of leading experts in the field of PRO research and measurement. As we gather #MOmentum in 2025, trust us to help bring innovation and expertise to your team’s hardest PCOR questions. Reach out to Qammer Azim to set up a meeting! #reintroduction #WhoWeAre #PCOR #pharma #2025

At Modus Outcomes, we’re getting back into the swing of things after the holidays and looking forward to an exciting year ahead! As the work world revs back into motion, we’re curious: What are you looking forward to reading or learning this year to drive professional growth and development? What new methods papers, literature reviews, or AI tools are at the top of your list? We’re kicking off the new year with three pivotal new FDA draft guidance documents: 1. 𝗔𝗿𝘁𝗶𝗳𝗶𝗰𝗶𝗮𝗹 𝗜𝗻𝘁𝗲𝗹𝗹𝗶𝗴𝗲𝗻𝗰𝗲-𝗘𝗻𝗮𝗯𝗹𝗲𝗱 𝗗𝗲𝘃𝗶𝗰𝗲 𝗦𝗼𝗳𝘁𝘄𝗮𝗿𝗲 𝗙𝘂𝗻𝗰𝘁𝗶𝗼𝗻𝘀: 𝗟𝗶𝗳𝗲𝗰𝘆𝗰𝗹𝗲 𝗠𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗠𝗮𝗿𝗸𝗲𝘁𝗶𝗻𝗴 (https://lnkd.in/eTu2bvSg) 2. 𝗘𝘃𝗮𝗹𝘂𝗮𝘁𝗶𝗼𝗻 𝗼𝗳 𝗦𝗲𝘅-𝗦𝗽𝗲𝗰𝗶𝗳𝗶𝗰 𝗮𝗻𝗱 𝗚𝗲𝗻𝗱𝗲𝗿-𝗦𝗽𝗲𝗰𝗶𝗳𝗶𝗰 𝗗𝗮𝘁𝗮 𝗶𝗻 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗗𝗲𝘃𝗶𝗰𝗲 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗦𝘁𝘂𝗱𝗶𝗲𝘀 (https://lnkd.in/eZQkCKug) 3. 𝗖𝗼𝗻𝘀𝗶𝗱𝗲𝗿𝗮𝘁𝗶𝗼𝗻𝘀 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗨𝘀𝗲 𝗼𝗳 𝗔𝗿𝘁𝗶𝗳𝗶𝗰𝗶𝗮𝗹 𝗜𝗻𝘁𝗲𝗹𝗹𝗶𝗴𝗲𝗻𝗰𝗲 𝘁𝗼 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗥𝗲𝗴𝘂𝗹𝗮𝘁𝗼𝗿𝘆 𝗗𝗲𝗰𝗶𝘀𝗶𝗼𝗻-𝗠𝗮𝗸𝗶𝗻𝗴 𝗳𝗼𝗿 𝗗𝗿𝘂𝗴𝘀 𝗮𝗻𝗱 𝗕𝗶𝗼𝗹𝗼𝗴𝗶𝗰𝗮𝗹𝘀 (https://lnkd.in/eC29Mmj9) We’d love to know: What’s on your (professional development) reading list for 2025? Here’s to a year of impactful collaboration and meaningful insights! #growthmindset #PCOR #patientvoice #PRO #ClinicalResearch #ClinRO #PerfO