Patient Advocacy Partnerships: Empowering Communities in Research

Introduction

Welcome to Simons Searchlight, an online international research program. We’re dedicated to building a comprehensive natural history database, biorepository, and resource network of over 185 rare genetic neurodevelopmental disorders.

View this brief video below showcasing the invaluable contribution of patient advocacy communities in propelling research forward.

At Simons Searchlight, we recognize the crucial role that patient advocacy groups play in advancing rare disease research. In addition to conducting research, we work hand in hand with patient advocacy groups to amplify outreach efforts and facilitate greater participation in Simons Searchlight.

Our Commitment to the Partnership: Outreach & Education

We develop compelling materials, including captivating videos, insightful interviews, and dynamic campaigns to raise awareness and encourage action within the genetic disorder community. By harnessing the power of engaging content, we aim to broaden knowledge and foster active participation among diverse audiences.

Whether through in-person meetings or virtual gatherings, Simons Searchlight actively contributes to advocacy group events. Our team of experts excels in delivering complex scientific content in a manner that is accessible and engaging, ensuring that your community members feel empowered and informed.

Expertise and Support

Simons Searchlight offers a wealth of expertise across various research topics – rare disease research, neuroscience, genetics, clinical science, behavioral development, and grant funding. Our team is committed to guiding advocacy groups as they navigate their development journey, providing invaluable insights and support along the way. Read more about the Simons Searchlight team.

Addressing the Responsibility of Data Stewardship

As stewards of data, we understand the weight that comes with managing sensitive information.

At Simons Searchlight, we take this responsibility seriously by implementing robust protocols and safeguards to ensure the security and integrity of our data at all times. We have a dedicated team and established processes in place to manage this, relieving you of the responsibility.

In addition to our commitment to ethical behavior, we are fully compliant with the General Data Protection Regulation (GDPR). We prioritize the privacy and protection of personal data, adhering to stringent GDPR guidelines to ensure that all data is handled lawfully, fairly, and transparently. Our comprehensive data protection measures are designed to maintain the confidentiality, integrity, and availability of personal data, providing our users with the confidence that their information is secure.

Participation Progress Dashboard:

We’re thrilled to announce the launch of the new Simons Searchlight Participation Progress Dashboard—a powerful, interactive tool designed to empower our patient advocacy groups with the most up-to-date data on your genetic community. This dynamic dashboard highlights our collaborative efforts and provides clear insights into participation metrics, including geographical and registration data.

With this dashboard, you can easily filter and customize your view, making it simple to track the progress of your community. The visual graphs offer a clear understanding of participation trends, equipping you with valuable information to share with your community, researchers, educators, and medical professionals.

Explore the dashboard today and use this resource to help grow your genetic community: bit.ly/Searchlight_Participation_Progress_Dashboard

Research Funding & Resources

High-quality science is essential to advance rare disease research. Our funder, the Simons Foundation Autism Research Initiative (SFARI), also provides competitive funding for external research projects. This ensures that scientists across the career spectrum, from basic to clinical and translational science, can apply to access resources to ask innovative questions relevant to the conditions that we study. SFARI’s long-term commitment brings stability to your ongoing scientific efforts.

And our commitment extends beyond funding, as we offer tangible support through a suite of in-kind services:

• SFARI Base (Researchers worldwide can access de-identified data. Almost 100 scientific articles have used Simons Searchlight data)
• Research Match (recruitment support for external research studies)
• Blood collection and biosamples management
• iPSC generation* 
• Dedicated gene webpages and gene guides
• Gene-specific publication summaries

This practical support allows you to focus on your mission without the logistical hurdles. Learn more about some of these research programs.

*SFARI does not automatically create iPSCs for all blood donations collected through Simons Searchlight. SFARI collaborates with scientists to prioritize samples for iPSC creation, ensuring they are impactful for research. Participant permission for individual iPSC creation is governed by the Simons Searchlight consent form.

Investing in Patient Advocacy Funding for Research Presented at In-person Conferences

Simons Searchlight offers gift funding through SFARI to patient advocacy organizations hosting in-person conferences with a substantial research component. Priority for funding will be given to advocacy groups that collaborate closely with Simons Searchlight to enhance recruitment and engagement.

We are excited to share that SFARI (Simons Foundation Autism Research Initiative) is offering funding for Patient Advocacy Group (PAG) Family Conferences, focusing on groups within the Simons Searchlight community.

SFARI RFA Grant: Conference Support for Rare Neurodevelopmental Disorder Communities in Simons Searchlight

This grant aims to enhance the research component of conferences by supporting everything from scientific presentations to in-person research opportunities for families. Whether your group is new to organizing conferences or has years of experience, this funding can help bring valuable scientific discussions to your community. Learn more and apply here.

The Role of Patient Advocacy Groups

Patient advocacy groups are invaluable partners in our mission. As on-the-ground ambassadors, you connect communities and position us as a trusted research partner. Your ongoing support amplifies our impact, enhances our ability to drive meaningful progress in rare disease research, and ensures that the needs of your community are at the heart of everything we do.

Together, we build strong collaborations that bridge the gap between families and researchers, accelerating discoveries and improving outcomes for those affected by rare diseases.

Why Choose Simons Searchlight as Your Research Partner?

Choosing Simons Searchlight as your trusted partner means gaining an ally committed to advancing our understanding of rare genetic neurodevelopmental disorders. With long-term commitment and funding from SFARI, we bring a dedicated team of experts, a long-standing registry platform, and research resources to the partnership, steering progress, fostering collaboration, and ultimately improving the lives of those affected by rare genetic neurodevelopmental disorders.

Contact Information

Interested in partnering with Simons Searchlight? Your journey starts with reaching out to our team at Coordinator@SimonsSearchlight.org. We eagerly anticipate the opportunity to collaborate with you.