CISCRP’s Free Community Health Event Returning to Boston, MA

On Tuesday, October 23, CISCRP will host AWARE for All, a free community health event, for the Boston community. To learn more and reserve your spot for this event visit awareforall.org or call 1-877-MED-HERO (1-877-633-4376).

The Center for Information and Study on Clinical Research Participation (CISCRP) invites the Boston community to attend AWARE for All, a FREE community health event on Tuesday, October 23, from 5:00 p.m. – 8:00 p.m. EDT at The NonProfit Center. CISCRP’s AWARE for All program is hosted in cities all over the world and is a chance to bring educational health information directly to patients and the public. This will be the tenth AWARE for All event the local nonprofit has held in the Boston area since 2003.

According to CISCRP’s 2017 Perceptions and Insights Study approximately 70% of the public has never or rarely considered a clinical trial as a treatment option with their doctor. CISCRP’s Senior Manager of Development & Community Engagement, Ellyn Getz, comments, “We are grateful for the support we have received from local community organizations to help us bring this event back to our Boston hometown. Our AWARE events provide the community with tools to help them advocate for and make informed decisions about their health. We encourage lots of questions and networking onsite.”

This educational event features many highlights including a complementary dinner and a number of free health screenings including blood pressure, glucose, glaucoma, flu vaccinations, mental health/depression, and HIV checks. Attendees will have time to connect with local and national community health advocates and researchers to learn about their resources and services. There also will be an overview presentation about clinical research and a panel discussion featuring research professionals and clinical trial participants.

CISCRP is producing the event with the support of Host Sponsor Biogen; National Sponsors EMD Serono and Lupus Research Alliance; Patron Sponsors Tufts CTSI, BMS, and Harvard School of Public Health; and Outreach supporter CenterWatch. Biogen’s Vice President of Global Clinical Operations, Murray Abramson, comments, “Biogen is committed to educating patients and their loved ones about clinical research opportunities. We are proud to support CISCRP’s AWARE for All event to bring a deeper awareness of clinical trials to their communities.”

AWARE for All Boston will be held on Tuesday, October 23, 2018 from 5:00 p.m. – 8:00 p.m. EDT at The NonProfit Center, 89 South Street Boston, MA 02109. Attendance is free, but please reserve your spot today by visiting http://www.awareforall.org or by calling toll free 1-877-MED-HERO (1-877-633-4376).

Editor’s Note: 
Community and research collaborators include: Alzheimer’s Association, American Liver Foundation, Asian Women for Health, Boston University Alzheimer’s Disease Center, Boston University School of Medicine, Brigham and Women’s Hospital, Bristol-Myers Squibb, Dana Farber Cancer Institute, Epilepsy Foundation of New England, Harvard T.H. Chan School of Public Health, National Association for the Advancement of Colored People (NAACP), Novartis, Samaritans Hope, Tufts CTSI, Walgreens, and many other prominent community and research collaborators.

CISCRP Releases New Video on Initiative to Improve Diversity in Clinical Research

The Center for Information and Study on Clinical Research Participation (CISCRP), a Boston-based nonprofit organization, announces a new video featuring an innovative program to increase awareness and knowledge of clinical research among diverse communities. With support from Janssen Research & Development, Pharmaceutical Companies of Johnson & Johnson, CISCRP customized a recreational vehicle — called “Journey to Better Health” — that visited 10 different Los Angeles community events, with over a quarter of a million people in attendance.

Research shows low participation rates in most clinical trials among minority communities yet their willingness to participate is relatively high. CISCRP’s 2017 Perception & Insights study, for example, found that 74% of Hispanics and 80% of African Americans said they would if asked.

The “Journey to Better Health” RV in Los Angeles joins a growing collection of novel, community-based educational initiatives developed and implemented by CISCRP. In 2017 CISCRP launched an empty pharmacy in Newark, New Jersey to highlight the importance of clinical research participation to advancing public health. Both initiatives helped to drive attendance at CISCRP’s live AWARE for All event, a free program that aims to educate and empower the public in making informed decisions about clinical research participation. Featured speaker, A.C. Green (former NBA player and founder of the A.C. Green Youth Foundation), commented, “Everyone’s different. That’s the great thing about us as human beings. [Clinical] studies need to reflect the same thing.”

“Diversity in clinical research participation is essential to the development of targeted and effective new medical treatments,” said Ellyn Getz, Senior Manager for Development and Community Engagement at CISCRP.

With the launch of the new video, CISCRP encourages people to look for the “Journey to Better Health” RV in their community and to learn more about clinical research. The video can be viewed here and will be shared widely with industry professionals and the public.

CISCRP’s 5K Run & Walk Event Honoring Study Volunteers Coming to Boston, MA

The Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization, is excited to announce its upcoming Medical Heroes Appreciation 5K Run & Walk in Boston. The 5K will be held in conjunction with the DIA 2018 Global Annual Meeting to celebrate the millions of people who take part in clinical research each year and make new medical treatments possible. All proceeds from the 5K will support clinical research education and outreach programs for patients and their families.

CISCRP welcomes all Boston-based running and walking enthusiasts, patients, caregivers, clinical research professionals, as well as CISCRP supporters and DIA 2018 Global Annual Meeting attendees to participate in this event. Participants can enjoy a scenic loop around Castle Island and a complimentary light breakfast provided by Starbucks and Trader Joe’s. Prizes will be awarded to top finishers, top fundraisers, and most spirited teams. CISCRP encourages all to stay for the bib raffle, which will include fun prizes like an iPad and gift cards.

“Medical Heroes are the millions of people who help advance public health and medical knowledge by taking part in clinical trials each year. We understand the importance of clinical research volunteers and are proud to support CISCRP’s mission during DIA 2018 Global Annual Meeting in Boston. It is our hope that DIA attendees will participate in in this event to honor Medical Heroes and raise awareness for clinical research,” says Sudip S. Parikh, PhD, Senior Vice President and Managing Director, DIA Americas.

This event is being sponsored by Olympiad Sponsor WCG Clinical, Champion Sponsor EMD Serono, Elite Sponsors Artcraft Health and Biogen, Participating Sponsors, The MRN, Amicus Therapeutic, GlobalCare Clinical Trials and Synchrogenix, and Booth Sponsors Synteract, Wegmans, Advanced Clinical, ClinEdge, Veristat, Eurofins and IQVIA. We are also receiving in-kind donations from Trader Joe’s, Starbucks and PR Restaurants.

Donald A. Deieso, PhD, Chairman & CEO of WCG (WIRB-Copernicus Group), the 5K’s Olympiad Sponsor, remarks, “We are honored to support an event that honors study volunteers for their contributions to public health.”

Onsite check-in begins at 6 a.m. and the 5K Run & Walk will begin at 6:30 a.m., following a brief Medical Heroes Recognition Ceremony. Register at http://bit.ly/MH5KBOS18PR. For more information about the event, to volunteer, or to become a sponsor, email ellyngetz@ciscrp.org. Questions about event registration should be addressed to Clarissa Budd via phone, 617-725-2750 x321, e-mail medhero5k@ciscrp.org, or call toll free 1-877-MED-HERO x321.

About DIA:
DIA (founded as the Drug Information Association) is a global association that mobilizes life science professionals from across all areas of expertise to engage with patients, peers and thought leaders in a neutral environment on the issues of today and the possibilities for tomorrow. As a member-driven, volunteer organization, professionals from 80 countries have affected healthcare outcomes, by engaging with DIA through an unparalleled network, educational offerings, and professional development opportunities. To learn more or register for the DIA 2018 Global Annual Meeting, visit DIAglobal.org.

CISCRP’s Free Community Health Event Coming to Los Angeles, CA

The Center for Information and Study on Clinical Research Participation (CISCRP) invites the Los Angeles community to attend AWARE for All, a FREE community health event on Saturday, May 19, from 11:00 a.m. – 3:00 p.m. PDT at USC’s Trojan Grand Ballroom. CISCRP’s AWARE for All program is hosted in cities all over the world and is a chance to bring educational health information directly to patients and the public.

Attendees will enjoy a free lunch and a variety of health screenings including blood pressure checks, fasting blood sugar, lipids, foot screens, diabetes, and one-minute HIV rapid tests. The event will include an “Information Alley” for attendees to connect with local and national community health advocates and researchers. There will also be an overview presentation about clinical research, a panel discussion featuring research professionals and study volunteer experiences, as well as inspirational remarks from local celebrity guest athletes.

The event is produced by CISCRP with the support of Host Sponsor Janssen, National Sponsor Lupus Research Alliance, Local Sponsors Providence Clinical Research, Science 37, and Bienestar, and Outreach supporters CenterWatch, The Conference Forum, WeHealth, and Wondros. Dr. Andreas Koester, Vice President at Janssen Clinical Innovation comments, “We are excited to raise awareness for clinical research in general and in underserved populations by collaborating with CISCRP.”

As part of this program CISCRP has collaborated with Wondros to develop an educational mobile unit. In the days leading up to AWARE, our first-of-its kind ‘Journey to Better Health’ RV will visit various neighborhoods around Los Angeles. The mobile unit will offer interactive activities and educational resources about clinical research. Jesse Dylan, the Founder of Wondros, remarks, “Like CISCRP, we believe not only in the value of clinical research, but in the critical importance of ensuring that diverse communities are properly represented. We’re proud to be able to do our part to help bring this vision to life.” For information on the locations that we will be visiting, visit awareforall.org

AWARE for All – LA will be held on Saturday, May 19, 2018 from 11:00 a.m. – 3:00 p.m. PDT at the Trojan Grand Ballroom at USC (located on the basement floor of the Ronald Tutor Campus Center) 3607 Trousdale Parkway, Los Angeles, CA, 90089. Attendance is free, but please reserve your spot today by visiting http://www.awareforall.org or by calling toll free 1-877-MED-HERO (1-877-633-4376).

CISCRP’s Free Community Health Event Coming to Washington, D.C.

The Center for Information and Study on Clinical Research Participation (CISCRP) invites the local D.C. community to attend AWARE for All, a FREE community health event on Thursday, April 19th from 5:00 p.m. – 8:00 p.m ET at the Armour J. Blackburn University Center. CISCRP’s AWARE for All program is hosted in cities all over the world and is a chance to bring educational health information directly to patients and the public within local communities.

This is the third AWARE for All event that has been held in the D.C. area since 2015. CISCRP’s Senior Manager of Development & Community Engagement, Ellyn Getz, comments, “We are excited to return to D.C. to bring our internationally recognized program back to this community and are thankful for the support we have received from many local organizations. The goal of these events is to bring together community members, clinical research experts, patient advocates, and patients to generate a meaningful dialogue about the clinical research process.”

Attendees will have access to free dinner and health screenings, including blood pressure checks, colorectal cancer screening, and COPD, glucose, hypertension, mental health, and rapid A1c tests. The event will include an “Information Alley” for attendees to connect with local and national community health partners and sponsors. There will also be a presentation about clinical research, a panel discussion with clinical research professionals, and a chance to hear from clinical trial participants who will share their experience.

The event is produced by CISCRP with support from Anchor Institutions Georgetown-Howard Universities Center for Clinical and Translational Science (GHUCCTS) and Howard University, National Sponsors EMD Serono and Lupus Research Alliance, Outreach Supporters CenterWatch and The Conference Forum, and Local Sponsors Clinical and Translational Science Institute at Children’s National (CTSI), Rare Patient Voice, and Emerson Clinical Research Institute.

Thomas A. Mellman, M.D., Program Director for the Georgetown-Howard Universities Center for Clinical and Translational Science (GHUCCTS) comments, “At GHUCCTS we seek to foster innovative projects that help to improve clinical research education and literacy, and advance public health. We are pleased to support CISCRP’s upcoming AWARE for All program in D.C. and encourage the entire community to attend and take advantage of the free health screenings, the chance to hear from actual clinical trial participants, and the opportunity to enhance their knowledge of clinical research.”

AWARE for All D.C. will be held on Thursday, April 19, 2018 from 5:00 p.m. – 8:00 p.m. ET at the Armour J. Blackburn University Center at Howard University, 2397 Sixth Street NW, Washington, D.C. 20059. Attendance is free, but please reserve your spot today by visiting http://www.awareforall.org or by calling toll-free 1-877-MED-HERO (1-877-633-4376).

CISCRP’s New Clinical Research Awareness Initiative Uses Empty Pharmacy Shelves to Educate Public and Patients

New clinical research awareness initiative shows what pharmacies would look like without the study volunteers and clinical trials behind medical discoveries.


The Center for Information and Study on Clinical Research Participation (CISCRP), a Boston-based nonprofit organization, has released a new educational video called the “MT Pharmacy”. Sponsored by Sanofi US, the digital public service announcement is designed to increase awareness of the important role that clinical research participants and clinical trials play in advancing public health.

While there are thousands of experimental drugs currently in development, with the potential to ease symptoms or even cure various diseases, none of these treatments will become available to patients without clinical trials and clinical trial volunteers. In a global study conducted by CISCRP in 2017, close to 70% of the public has never or rarely considered clinical trials as an option when discussing treatment options with their doctor or health provider. And only 6% of people who suffer from severe and chronic diseases participate in clinical trials each year. Low participation rates delay and limit the development of new medical therapies.

Clinical trial participation is often overlooked as a treatment option by patients and health care providers due to low awareness, low perceived relevance, and inadequate access to information. As part of its’ larger mission, CISCRP produces a number of educational programs and initiatives that focus on raising clinical research awareness, educating patients and the public about clinical research, and enhancing study volunteer experiences during and after clinical trial participation. “Sanofi is proud to collaborate with CISCRP on the MT Pharmacy initiative to raise awareness of the importance of clinical trial participation,” said Peter Lalli, Head of Sanofi North America Corporate Social Responsibility. “Clinical trials are essential for gaining access to new therapies and helping to ensure medicines are safe and effective across all patient populations.”

The MT Pharmacy initiative is a creative new positioning developed in collaboration with Langland, an international ad agency. The goal of the MT Pharmacy is to demonstrate what modern medicine would look like without clinical trials and study volunteers. Ken Getz, Founder and Board Chair of CISCRP, comments “The MT Pharmacy is a novel approach to both engage the local community and to educate the public through the words of real people. The initiative also encouraged attendance at an AWARE for ALL live educational program held in Newark later in the week. CISCRP plans to replicate this initiative in other cities throughout the world to continue to elevate knowledge and literacy about clinical research participation.”

The video of the MT Pharmacy initiative can be viewed here and will be shared widely with clinical research professionals and the public.

CISCRP Brings Flagship Community Health Event to Wilmington, NC

On Wednesday, November 15, CISCRP will host AWARE for All, a FREE health and education event, for the local Wilmington, NC community. Attendees will have access to health screenings, dinner, prizes, and information about clinical research and clinical trial participation, and can learn more or register for this event through www.awareforall.org or by calling 1-877-MED-HERO (1-877-633-4376).

The Center for Information and Study on Clinical Research Participation (CISCRP) is bringing its leading community health forum to The Burney Center at UNC – Wilmington on Wednesday, November 15th. CISCRP hosts AWARE for All events in cities all over the world in an effort to bring educational health information directly to patients and the public within the local community. It is a chance for the public to interact with local researchers, clinical trial patients, health care professionals, and advocacy groups to learn more about clinical research and clinical trial participation. The Wilmington AWARE for All event will be held from 5:00 p.m. – 8:00 p.m. EST and is free and open to all.

Barbara Pennington, Clinical Research Program Coordinator at UNCW College of Health and Human Services, remarks, “Bringing AWARE for All to the Wilmington area is an opportunity for our local community to learn more about clinical research and what it means to participate in a clinical trial. We want people to feel empowered about their health care options and hope that we can connect with individuals to help them become more informed about the clinical research process and the important role that study volunteers play in that process.”

Attendees are encouraged to bring family and friends and all will have full access to free health screenings and flu shots, free dinner, raffles, prizes, and giveaways, as well as take-away information and resources about clinical research. The event will feature an “Informational Alley” where local and national community partners and sponsors will set up exhibit tables to interact and share information with attendees.

CISCRP’s Senior Manager of Development & Community Engagement, Ellyn Getz, comments “CISCRP aims to bring AWARE for All to diverse communities in the hopes of educating people about clinical research so that they can make informed decisions about their own health. We are excited to host this program for the Wilmington area and welcome the entire community to take part.”

The event is produced by CISCRP with support from national sponsors EMD Serono and Lupus Research Alliance, local sponsors Carolina Arthritis Associates and StarNews Media, along with other local and community sponsors.

AWARE for All Wilmington will be held on Wednesday, November 15, 2017 from 5:00 p.m. – 8:00 p.m. EST at The Burney Center at UNC – Wilmington, 601 S. College Road, Wilmington, NC 28403. Registration is free, but advanced registration is encouraged and can be done by visiting www.awareforall.org or by calling toll-free 1-877-MED-HERO (1-877-633-4376). As a bonus, those who register and bring a friend or family member will automatically be entered in a raffle to win a Kindle!

Editor’s Note:
Sponsorship and exhibit opportunities are still available; email kseider@ciscrp.org to learn more.

TCS Launches ‘Connected Clinical Trials’ Platform on its Advanced Drug Development Suite

CCT is part of TCS’ Advanced Drug Development (ADD) suite that offers a wide range of cloud based clinical services, including Clinical Data Management, Metadata Management, Pharmacovigilance, and Data Analytics and Insights. ADD is powered by a cognitive engine called ‘Decision Fabric’ that enables automation of complex business processes. ADD leverages the best of cloud architecture and intuitive user experience design in compliance with “good clinical practice” quality guidelines (GCP) and privacy regulations.

TCS’ Connected Clinical Trials Platform provides a scalable cloud solution that addresses patients’ needs through various clinical trial stages, including enrolment, treatment and follow-up stages.

CCT includes four modules:

  • CCT Tracking: utilizes scanners to track all medication kit transactions at the site to prevent dispensing errors, ensuring that the correct medication kit is given to the right patient at the right time.
  • CCT Communication: provides patient-specific, real-time notifications, dosing instructions, tutorial videos via smart phones, enables continuous adverse event data collection, and facilitates personalized patient support in medication dosing and study procedures.
  • CCT Label: employs patient specific and easily readable all-in-one electronic drug labels in the patient’s preferred language.
  • CCT Adherence: enables registration and verification of individual intake via sensor enabled medication packages (smart packages) to eliminate guesswork for medication intake, ensuring that the right pill is taken at the right time.

Janssen Research & Development, LLC collaborated with Tata Consultancy Services (TCS) to build-out TCS’ Connected Clinical Trials (CCT) platform, as part of the Janssen integrated Smart Trial and Engagement Platform. 

The CCT platform has also been tested and proven in a live set-up at TCS’ state-of-the-art User Experience labs with global patient and site advisory boards. This was conducted in collaboration with the Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization dedicated to educating and informing the public and patients about clinical research.

“I believe the CCT platform will help us to accurately track patient adherence to the study protocol, while also helping us to more easily and efficiently manage trial supplies at the site,” said Harpreet Isha Monga, B.Pharm, M.Pharm, PHD, Clinical Research Coordinator and Neuropsychiatric Rater at Neuro-Pain Medical Center Inc.

“TCS’ Connected Clinical Trials will enable life sciences companies to harness digital technologies to engage with patients more effectively during clinical trials and significantly improve adherence to medical dosage during those trials,” said Debashis Ghosh, President – Life Sciences, Healthcare, Government, and Energy Business Group, TCS. “TCS’ strong domain and technology expertise makes it well positioned to offer advanced platform solutions catering to specific needs of the industry and we are excited to have Janssen as our first customer on CCT.”

About TCS Life Sciences:
TCS Life Sciences provides top global Life Sciences organisations full service offerings in IT, Consulting, KPO, Infrastructure, and Engineering Services, as well as digital solutions using Mobility, Big Data, Analytics, and Cloud. TCS’ rich industry experience, domain expertise and global footprint allows for a seamless partnership with its Life Sciences customers to help them advance clinical trial efficiencies, accelerate drug discovery, accentuate manufacturing productivity, and amplify sales and marketing effectiveness. In addition, TCS has a dedicated Life Sciences Innovation Lab, which ensures that its customers have the tools and innovative solutions they need to solve complex business challenges.

About Tata Consultancy Services Ltd (TCS):
Tata Consultancy Services is an IT servicesconsulting and business solutions organization that delivers real results to global business, ensuring a level of certainty no other firm can match. TCS offers a consulting-led, integrated portfolio of ITBPS, infrastructureengineering and assurance services. This is delivered through its unique Global Network Delivery Model™, recognized as the benchmark of excellence in software development. A part of the Tata group, India’s largest industrial conglomerate, TCS has over 389,000 of the world’s best-trained consultants in 46 countries. The company generated consolidated revenues of US $17.6 billion for year ended March 31, 2017 and is listed on the BSE (formerly Bombay Stock Exchange) and the NSE (National Stock Exchange) in India.

CISCRP Returns to Chicago to Host Community Health and Education Event

The Center for Information and Study on Clinical Research Participation (CISCRP) is returning to Chicago for the second time this year to host a community health forum, called AWARE for All, on Thursday, October 26, 2017 from 5:00 p.m. – 8:00 p.m. CDT at the University of Illinois Chicago Forum. AWARE for All educational event, established by CISCRP, provides information and resources about clinical research and clinical trial participation to help the public make informed decisions about their health.

EMD Serono, one of the National Sponsors of the event, comments on the importance of bringing this type of program to local communities, like Chicago, in an effort to build greater public awareness of clinical research. “AWARE for All provides a unique opportunity to not only generate awareness around clinical research participation, but in addition offers a very special occasion to publicly thank and recognize the importance of clinical trials participants for their role in the advancement of medical science,” said Paulo Moreira, Vice President, Global Clinical Operations – External Innovation at EMD Serono.

The three-hour event is free and open to all. Attendees will have a chance to receive health screenings and flu shots, eat dinner, visit exhibitors, hear from experts about clinical research, and listen to patients share their experiences with clinical trials. The event will end with a Medical Heroes Appreciation Ceremony, honoring those who participate in clinical trials within the greater Chicago community. There will be prizes and giveaways as well as take-away information and resources about clinical research.

The Lupus Research Alliance, another National Sponsor for the event, remarks on why participating in AWARE for All events can benefit patients and their families. President and CEO Kenneth M. Farber noted, “Clinical research is essential to develop new therapies for people with difficult-to-treat diseases like lupus but awareness and participation is often low. The AWARE for All program makes it easy to learn about the many different clinical studies being conducted in their area so people can consider joining a trial as a treatment option.”

The event is produced by CISCRP with support from national sponsors EMD Serono and Lupus Research Alliance, and local and outreach sponsors Investigator Support Services, Uptown Research Institute, UltraGenyx, American Diabetes Association, and the ACRP – Chicagoland Chapter.

AWARE for All Chicago will be held on Thursday, October 26, 2017 from 5:00 p.m. – 8:00 p.m. CDT at the University of Illinois Chicago Forum, 725 W Roosevelt Road, Chicago, IL 60608. Registration is free, but advanced registration is encouraged and can be done by visiting http://www.awareforall.org or by calling toll-free 1-877-MED-HERO (1-877-633-4376). As a bonus, register and bring a friend or family member and be entered in a raffle to win a Kindle!

Sponsorship and exhibit opportunities are still available; email cbudd@ciscrp.org to learn more.

Lysogene Holds First Parent Advisory Board in MPS IIIA

Lysogene (FR0013233475 – LYS) (Paris:LYS), a leading, biopharmaceutical company pioneering gene therapy technologies to treat central nervous system diseases, today announced the first meeting of the Parent Advisory Board for parents and caregivers of children with Mucopolysaccharidosis Type IIIA (MPS IIIA), also known as Sanfilippo A, in August, 2017 in Minneapolis (US).

The Parent Advisory Board, dedicated solely to patient-related needs, views, and concerns, was organized by Lysogene in collaboration with the National MPS Society, the Cure Sanfilippo Foundation and the Center for Information and Study on Clinical Research Participation (CISCRP). The objectives were to better understand patient and caregiver experiences with MPS IIIA, assess general perceptions of clinical trials for MPS IIIA, and solicit thoughts or reactions to proposed clinical trial design for the treatment of MPS IIIA.

All Advisory Board members had experience as a parent or caregiver of a patient with MPS IIIA and provided their personal experiences with the disease and the challenges of clinical trial participation. During the meeting, parents confirmed the significant life-changing impact this disease has on families and that symptoms and severity can vary between children. Children with MPS IIIA suffer neurological symptoms, including developmental delay, difficulty sleeping, hyperactivity, and issues with motor functions (e.g., difficulty grasping or head turning one way).

“Lysogene is dedicated to placing the patient at the center of the clinical trial design, and feedback from the Parent Advisory Board will be a tremendous addition to our efforts,” said Samantha Parker, Lysogene’s Chief Patient Access Officer. “The value of the meeting was beyond our expectations, and we thank the families for their candid input. We intend to use the valuable feedback in the design of our pivotal clinical trial in MPS IIIA.”

“We appreciate the opportunity to organize this Parent Advisory Board in conjunction with Lysogene as it gives voice to families impacted by this devastating disease,” said Annick Anderson, Director of Research Services at CISCRP. “Understanding the path families take in getting a diagnosis and the challenges in caring for children with MPS IIIA will ultimately result in better treatments for patients.”

About Lysogene: www.lysogene.com